blogger, control, diabetes, diabetes educator, diabetic online community, dietitian, DOC, doctor, forum, health care team, insulin
I’ve seen a number of posts on forums lately from people who have recognized their diabetes is not in the best control, but they don’t know what to do about it. They are following their health care team’s (HCT) orders, but it’s not working.
Of course without exception whenever such people try to shift blame back on their HCT: what you are telling me to do isn’t working; those HCT members almost always shift blame back to the patient: you aren’t doing it right.
How many of us have experienced this? How many of us have ranted about it? How many blog about it?
The Bad Diabetic
Let’s make one thing perfectly clear. Manageing diabetes is a personal effort. I, the diabetic, am in charge of my own care. I make my own decisions. I stear the ship.
This idea may seem self-evident, but it’s suprising how many of us defer our responsibility, and it’s even more surprising how so many in our HCT refuse to acknowledge it.
I’ve talked with many diabetics who have never even considered making their own decisions: Linda (the Diabetic Educator or DE) says I have to do it this way. I could never do what you’re talking about. The lady was obese, uncontrolled, and slowly sliding downhill. She might be dead now, or worse. It’s been a couple of years. And there are things worse than death. I have no desire to lose my legs, my eyesight, and be hooked to a kidney machine three days a week. The bottom line is this woman would not take control of her own condition. Everything she did had to be vetted by Linda. Linda deals with 5,000 diabetics. She has no time to provide day-to-day or hour-by-hour care for diabetics. The best she can do is train them and ship them out into their own hells. Should she do differently? Definately. Part of the problem is our HCT does not want us to assume control. It’s too dangerous. Everything major should be approved. Don’t make medication changes. Don’t make dietary changes. And whatever you do, don’t ask other diabetics. Stay away from those dangerous bloggers!
The reality: I make 6 to 10 life and death decisions every day. This is not exaggeration. This morning my BGs were 8.4 mmol/l, rather high. I changed my pump set then bolused 3u. My new set might not have worked at all. Maybe it might send my BGs high and blur my vision while I’m driving to work. I could maybe feel my sugars rising and hurry in so I could correct again, but I’d be putting my life and my wife’s life in danger. Then my meter might have been wrong. It happens. Those 3u might send me hypo on the way to work. I am insensitive to them after my long years of battle, so I’d very likely drift off into shock while driving at speed. Doesn’t that sound like fun? I repeat this several times a day, day after day, year after year. I sometimes think it’s a wonder I’ve only been 911’d nine times.
My HCT cannot be with me when I make my daily life and death decisions, and since I’m the one in danger of dying, I’m the one that needs to take control. And if they don’t like it, tough.
That doesn’t mean I’m flying solo. Taking control of the wheel doesn’t mean I’m firing my HCT. No, a good manager surrounds themself with good people. I want to make the very best decisions I can, so I want the very best information and advice I can find. My HCT sits at my board table and is a key member of my team, but it’s my team.
I include many people at my table. I have bloggers, I have publications, I have scientific studies, I have various forums I visit, I have personal friends with diabetes, and I have my family. The Diabetic Online Community (DOC) is the deputy chairman of my board. The DOC is largely ignored by my HCT — they don’t talk at all — but I listen to them both.
The DOC has a huge strength that my HCT doesn’t have: it’s always at the table. I hold board meetings every day, sometimes several times. MY HCT chair is almost always empty. When I count up the annual attendance, I might come up with three or four meetings they attend each year. But we have decisions to make today. I have a decion to make right now. My two-hour follow-up reads 9.2, higher than this morning. I’ve only eaten a coffee with heavy cream and coconut oil. My body feels even higher. I look around and there is nobody at the table but you and me. I can call the DOC in, and I’ll get different opinions. But I don’t really need their help for this problem I need immediate oeprational action. I could call my HCT, but they’d question my sanity: this is a day-to-day operational problem. Board memebrs don’t make day-to-day decisons. We’ll discuss the trends during the annual meeting. You’re right, I’ll say to them, what was I thinking?
I need a decion made right now. Waiting an hour for a half dozen opinions will only make things worse. In this situation, I need to take action, and I need to take it right now. I’m assuming my set failed around 5am; though there’s no immediate cut-off. I’ve experienced this before, and I know I need extra insulin. I just bolused four more units. I have sugar tablets at the ready, and I’ll test again in two hours.
Let’s get back to our HCT.
They don’t actually tell me that I’m in control of daily operations. They might assume it, but they don’t like to say it. They are like that retired owner of the business who can’t stay away from his office and can’t resist telling the son what he needs to do to grow the shop. He can’t say “Son, the ball’s in your hands now. Run hard!” He can’t let go. My HCT can’t let go. They can’t be with me, but hey can’t let go: You need to do this, that, and the other things. I’ll make a note and we’ll discuss it next year.
Some of the decisions I make are not so cut and dry. I set my own insulin dosages. I set my basal rates and bolus rates. I decide what diet to follow. My diet looks nothing like my HCT’s plan, and they give me a hard time about it, but they don’t have many patients running a 5.6 A1C with almost no hypos either.
Can you feel the distance between diabetic and doctor? Have you experienced it? Can you see the need to have someone in charge, someone to make those day-to-day and hour-to-hour life and death decisions? Is there anybody better positioned to do this job than you?
Of course you are afraid. You know what a bad decision means. It means at best criticism from your board of directors: you screwed up badly, John. What the hell were you thinking? The company was lucky to survive that one. Yeah, well, how much do you have invested in this company Bob?
Fear is not productive. You will not attain good control if you do not assume control. You cannot make those operational decions that need to be made if you are too afraid to make them. Failure is imminent. 90% of diabetics fail to achieve the desired level of control. I say 90% of diabetics fail to take control of their disease.
Stand up and take control of your diabetes. Take control of your life!
*Part 2 will cover basal insulin
*Part 3 will cover testing
*Part 4 will cover lifestyle changes
I have to say that I loved this post! I also agree that we (diabetics) have to take contol and manage our care/life. I consider myself lucky to have a really good HCT, and am slowly getting more comfortable in making the changes I need to survive. I look foreward to parts 2, 3, and 4!
Thank you. There is some movement afoot to turn our long term self care into a patient centric model. It wil be slow, though.