Living with Diabetes

People sometimes wonder why I am so passionate about diabetes management so let me try to explain it.

I know how close I came to:

1. Doing nothing because I got no help from the medical profession or
2. letting it go because they failed totally in getting me to understand THIS IS SERIOUS, or
3. how close I came to waiting till “IT GOT WORSE” because I “wasn’t as bad as the other people there.”

Item C is the classic denial syndrome that alcoholics use to show they don’t really have a problem! Guess that put me in the Egyptian river, De-Nile. (denial).

I will put it bluntly because sugar coating diabetes kills. It is your life, not the doctor’s. You and he are like the pig and the chicken in a ham and eggs breakfast. He and the chicken are involved, you and the pig are committed. You are like the pilot in the story about the pilot and the air traffic controller. If either of them make a mistake, the pilot dies. If either of you don’t manage your diabetes, you die. You have an alternative the pilot doesn’t have, he can’t get another ATC, you can get another doctor. But don’t shop for one who tells you what you want to know. The effects of diabetes on the body are for the most part not reversible. Once the damage is done you can’t fix it. You know the line, “All the kings horses and all the kings men, couldn’t put Humpty Dumpty back together again.” You don’t want to wait till it gets worse. Worse for the diabetic is blind, minus a leg or two, on dialysis or dead.

Few people die of diabetes, my grandfather was somewhat an exception but really he died from neglect. He went into a diabetic coma and wasn’t found in time. If someone had gotten concerned he wasn’t home at midnight and checked they would have found him alive but in trouble. He was at his shop working. He rarely worked after nine. When a diabetic doesn’t show up where they should it should raise concern. This is something for those who are around diabetics to remember.

What do you do if something goes wrong? At one time I would have said this applies to anyone who is diabetic or those who around diabetics, i.e. family and friends. But today I see that differently. I believe there should be a one or two hour class on diabetes including prevention, treatment, and living with a diabetic as part of the health classes in school. They can teach how to put on a condom, let’s teach how to recognize a diabetic who is in trouble. I had a brother in law who was diabetic and I knew if he got too much insulin we had to get him something. I read a lot on a lot of subjects so over the years I have read articles on diabetics who have gone into insulin shock and died for lack of someone knowing what to do. Diabetics have been mistaken for being drunk, thrown into a drunk tank and died there. This lack of help is what killed my grandfather. I would not have considered myself an expert on the subject.

In 1997 I was working on Y2K program fixes. There were four of us in an office cubicle, each facing a corner. I had a question for the gal who was directly behind me and said, “Hey Kim.” (Not her real name.) I didn’t get an answer for a couple calls. I turned and she was staring at her computer screen, I repeated the call and no response. I slid over to where I could see her face. She was staring, fingers on the keyboard but not moving, her body almost rigid. I waved my hand between her and the screen and she mumbled something. I asked if she was sick. She mumbled. My mind raced, she reminded me of my brother in law. I asked. “Are you diabetic?” She thought and then spoke a weak, “Yes.” “Did you take insulin this morning?” Again thought. “Yes.” Diabetics in insulin shock have to think to give even a simple answer. Don’t confuse them with a complex question. Without that answer I would have done nothing but call paramedics. You don’t want to give more sugar to someone who already has a 400 plus blood sugar. “Did you eat?” “No time.” She had taken her insulin and not eaten. Her blood sugar was perilously low.

I turned to the other two guys, “Kim is sick, one of you get the boss, the other go to the cafeteria, get a glass of OJ and a couple packs of sugar.” They got up and left, I started the process of getting the boss and something to bring her out. But I really didn’t want to wait for the OJ. While they were gone I saw she had a cup of black coffee. I turned to my desk, I usually kept a couple packs of sugar, there was none there but there was a pack of pancake syrup. I opened it, stirred it into the coffee and started getting it into her.

The boss showed up as I was starting to get some of it into her, I filled him in and suggested we get her to the hospital. He left to call her husband and the other guy came back with the OJ. I switched from the coffee to the OJ. The rule is 15, 15, 15. Fifteen carbs, wait fifteen minutes, then fifteen more carbs. By the time her husband arrived she was starting to come around and be a little more responsive. He took her to the hospital, about four blocks away. She had done the classic, taken insulin and not eaten. She was fine and back at work in a day.

Two years later I was in a Residence inn at Hartford CT. After a while there you see the same people morning after morning. I had been there over six months at the time and there were some who had been there longer. One morning a man shuffled into the desk area that is also the common area used for breakfast. I recognized him as a long timer there who was always smiling, upbeat, often joking with someone he barely knew. He was almost like in a daze. He shuffled to the desk and stood. He was unresponsive to the clerk, he just stood there. She was confused and frustrated. I motioned to the other clerk and she came out into the common area. I told her this was symptomatic of either diabetic shock or possibly a mild stroke, we should get him help. The other clerk thought he was being weird. The clerk I talked to got his attention and asked if he was diabetic. He nodded yes. I told her to ask if he had taken insulin, he nodded and said, “Got phone call.” He apparently took the insulin, got a phone call that lasted too long and didn’t eat. We helped him to a seat and they called the paramedics. Their station was just up the street and they were there in a couple minutes. He was back the next day, his old self.

Most diabetics who have uncontrolled blood glucose (sugar) level die of diabetic complications, heart disease, kidney failure, stroke, infections due to circulatory problems, usually in the feet and legs. More often than not this is amputation time and the person survives. Unfortunately the usual life span after amputation is less than two years. The amputation makes the person more sedentary, without a real lifestyle change they get less exercise and they get worse.

In case you haven’t figured it out, THESE THINGS ARE BAD. YOU DON’T WANT TO GO THERE. If your doctor brings up the “D” word, listen and act.

I deal with organizational forensics, what goes wrong in an organization that brings on bad things. I do reviews of problems. So when I got the diagnosis of diabetes I looked at it that way. I realized HOW I GOT HERE IS NOT IMPORTANT. It is where I will be five or ten years from now and what I can do to make it better.

I’m 64. With my family history I have 20-35 more years if things go well even with the diabetes. All of my grandparents lived past the late eighties except the grandfather mentioned above and he made it to nearly eighty. If I let my A1C float up to 8 or above for a year or two in 5 years I will be either dead, blind, loosing a limb or two, or in serious condition – stroke, kidney failure, heart attack. I want to keep the A1C at less than six.

I know all too well none of us are guaranteed life 3 seconds from now. My question is the same as if I were going to Vegas to gamble, “What can I do to tilt the odds in my favor?”

I am sure there are those who will sit in envy and those who will wonder why I am aggressively working on this problem based on the next statement.

My A1C/FBG’s were 6.1/125 (3/2004) 6.2/129 (9/2004) 6.2/139 (3/2005) 6.9/149 (8/2005). More recent ones have not gone above 6.1/125.

The numbers before 8/2005 are not real bad but they are an indication that action is needed. On 8/24/05 I was still unaware of what A1C meant and my doctor had not shared any of this although he was testing for this for three years. He just told me for the first time on that day I was diabetic, get a meter, test and come back in 3 months. And oh, BTW, there is a class you probably should look at taking. No red flags, no big concern. He did very close to a 100% perfect job of tracking my disease, of recommending treatment. Some will say he should have said something on the previous appointment, that is debated by the best doctors, I would have called him right had he acted on either the one before or even if he had waited one more test to see if it stayed up. I would only question what reason he had to think the steady up line would reverse. My only concern in his handling was in his failure in that setting to give me concrete direction on what action I needed to take. I think had he told me six months before that things were headed that way I might have taken it more seriously. And he didn’t give me numbers to show it. I need numbers, not opinions.

Although I had a grandfather and dad with the disease, my grandfather died because he was alone without help, my dad didn’t have any serious problems with diabetes. I do know that a great-great aunt died with a sore on her leg that would not heal, a possible diabetes complication. I was in my mind “borderline” so I didn’t have to worry. ALL OF THIS IS WRONG but my doctor didn’t address it so I walked out believing it. When I walked out of his office what I knew about diabetes was what I walked in with. He should have given me a strong push to see a CDE (certified diabetes educator). This is a person who is part nurse,. part dietician, part coach, who has experience in diabetes management. Doctors think diabetes management is MEDICINE. If you rely on that you are fighting the war with only one of the weapons. I would not have wanted to go in Normandy on D Day with just a rifle. I would have wanted to take along grenades, bazooka’s, Bangalore’s, a few tanks and the like. It is the same here, use every weapon, your life depends on it. The other weapons are education, diet, exercise and most important, personal commitment to SURVIVE because without that you will not use the others effectively. The CDE cannot prescribe medicine but can usually work with a doctor to get you what you need to defeat the disease.

What your doctor doesn’t tell you about diabetes can kill you. What is worse, many of them are about as competent to manage diabetes as they are to perform open heart surgery. Let me throw the line at you that got me off the road to destruction. “If you want to go blind, loose a leg, have a stroke, heart attack, screw up your kidneys, I can’t stop you. But if you want help I will try.” That is what a co-worker told me after about 3 weeks of frustration and being a real grouch at work. I was so angry that I had gone to the parking lot to throw the meter away. He was there at the door smoking and knew something was wrong. He gave me that response when I told him. That statement got my attention and in fifteen minutes he taught me basic carb counting and I have been on the way to control since. After three weeks of mentoring that way he told me that I really needed to take a class. My blood sugars were much better. He had credibility. What he told me was working. In the class I learned the importance of doing something now when I told the instructor that I wasn’t bad, why not wait a few years to worry about it. She gave me a copy of the British study and that got my attention.

No matter where you are in numbers if you are diabetic the time to start is now, not later. If you are where I am, you may never have any diabetes complications. If you have already damaged eyes, feet, kidneys, heart, you will most likely not be able to reverse it but you can generally delay it getting worse and get help with the symptoms and effects. Doing nothing means the disease marches on destroying your body.

Get aggressive. If you doctor hasn’t explained it, get someone to. A CDE is good, they are usually listed in the phone book under Diabetes Management. The ADA web page is a good place, I regret I didn’t know about it in August 2005. If you look at their forum you will find people posting questions and looking for answers. Why? Because the game plan is to not die of diabetic complications, go blind or loose a leg. As an aside, my dad died of Colon cancer at 79. I had a colonoscopy last year just before the diabetes diagnosis because I flunked a colo-rectal screening. Came up clean. When I asked the doctor when I should have that test again he said, 10 years. When I reminded him of the parental cancer he revised that to 5 years. Even good doctors miss things. Mine has, he is a good doctor or I would be somewhere else. Doctors are not bad people, they are fallible humans. So I ask. If a doctor doesn’t like being asked a question, I will find someone else.

I demand copies of my blood work and tests. I have a spread sheet with my blood work, I look for trends. I want to see what is happening. Any doctor who refuses to let you see test results should be viewed with suspicion. If he tells you that you will not understand – be concerned. Ask why.

Nobody can cure diabetes. We can either live with it or die from it.