When I was recently in Great Falls, I strolled through the bookstore as usual (mostly on my way to the magazines) and stopped idly when I saw a copy of “Diabetes for Dummies” at 40% off, probably because it was published in 2004 (2nd edition) and diabetes research travels so fast that there must be another edition out by now. It was EXACTLY the book I needed! The author was Alan L. Rubin, MD, who is not afraid to tell it like it is. I have to keep saying to doctors, “I am NOT STUPID!” but ironically, Dr. Rubin doesn’t think I am.
The biggest problem I seem to have when talking to doctors about my diabetes is that they try to manage me, partly by not telling me complexifications and if/then exceptions (assuming that I won't be able to handle them), and partly by trying to scare me into compliance with their standards. (Their standards do not necessarily agree with each other, which is a major part of the problem.) The second biggest problem is that they were educated some years ago and since then their biggest source of information has been some pharm salesman. They can hardly keep from resenting a patient who gets on the Internet and raises questions or studies they’ve never heard of. And they stubbornly cling to the idea that it’s all about sugar. I suppose they’ve developed this nasty practice because many people’s response to diabetes is denial.
Apart from the doctor, my problem has been trying to understand what my blood glucose readings should be and WHY? WHY, WHY, WHY everything! (Doctors hate that. Nurses aren’t real tolerant of questions either.) Everything in diabetes depends upon the patient to consistently take readings, record them, and adjust accordingly. (Unless you live with your mom or have a particularly protective housemate.) The very essence of the problem is that normal mammal bodies do that automatically, but diabetes means the monitor is broken and the conscious mind must take over.
Establishing a new routine (blood stabs, pills, exercise, etc.) takes energy and memory. If one is confused, angry, depressed, or inclined to just check-out -- things don’t go well. I don’t know how drunks, or ancient or demented people can survive -- maybe they can’t. I joked that if the cats cared as much about my blood sugar as much as they did about their cat food level, I’d have it made. They DO wake me up, keep me on a schedule, etc. If they were dogs, they might even force some exercise on me. The doctor was not amused. She did not suggest what I am considering: an alarm wrist watch. If you’ve ever been around people with HIV or AIDS, which I have, you’ll be aware of their alarm pill boxes. Good for people like me who sit down at the computer with a book and look up hours later.
The strategy of not telling me things, whether I need to know them or not -- and who are THEY to decide whether I need to know? -- and then -- going in the opposite direction, threatening me with ghastly fates like blindness or amputation, makes me shriekingly angry and breaks trust, so that I go back to the Internet with renewed determination to just rely on myself.
“Diabetes for Dummies” does not make me angry. Dr. Rubin explains that the idea is to stay as close to 100 blood glucose as possible, with a little wiggle up to 120 and down to 80. One of the myths he addresses is the idea that if one is in perfect control, one's readings will always be perfect. BUT he is the first to say that going below 80 is not a good idea and that if one tends to go that low or lower, there is some risk of slipping into incoherence without realizing it. In my case, I found the prospect so scary that I kept my blood sugar a little higher than I probably ought to have.
When I was first given a prescription the doctor was reacting to my blood sugar, which was over 300 but she didn’t TELL me that. She just said, “Take this pill and this pill, etc.” When I got home and started the regime, my blood sugar plunged and the little meter got all excited. I called the doctor’s office, but of course she was busy. The nurse said, “What do you want US to do?”
“How do I know?” I asked. “I’ve only just been diagnosed.” She came back with a complicated set of directions about cutting pills in half. I didn’t even know the names of the pills or the routine, so I asked questions. Nurse left, nurse returned, said (exasperated), “Oh, just don’t take ANY meds except for high blood pressure.” So that’s what I did for the next six months. Reading and pamphlets told me to lose weight, eat no sugar and few carbs, go to low-glycemic foods. That worked. At least I thought it worked.
Then suddenly I got a call summoning me for a doctor’s appointment. It was just before Christmas and the roads were bad. “What is it FOR?” “I don’t know. I just do what I’m told.” It must have been a six-month checkup. I had my usual cheese and toast breakfast. Maybe two slices instead of one, since I didn't know when I could get lunch.
When the doctor saw me she was visibly upset and rather angry. Later it developed that my urine test showed sugar in my urine, which is bad, because if one’s kidneys must deal with much sugar, it damages them. (I read it in "D for D"!) Thus began a complicated cat-and-mouse game of questions and guarded answers, her trying to figure out what I was REALLY doing (sugar buns, jam on my toast?) and me trying to find out what she was REALLY asking. It turned out that I WAS doing things wrong, to some degree, even though my A1c test showed I was within the recommended boundaries. But there were exchanges that still ring in my ears: “How can I be throwing sugar in my urine when my blood glucose tests are all where they ought to be?” “Because you’re deliberately taking readings only when you know they’ll be good.” It wasn’t true.
What “D for D” has done is put me in position to know when I’m being manipulated. Now to find a doctor who won’t manipulate, particularly when their strategy is “everyone else is doing it,” and “most people” and “all the other gals like you...” These quotes are from more than one doctor. In this part of the world, one resists authority figures but does what similar people around one are doing. If everyone is mowing their lawn, you should get out there, too. So the doc says, “Everyone is taking this pill!” Conformity equals morality.
In the City of Portland I worked as a clerical specialist. My desk was pushed up against another desk belonging to another clerical specialist so I could cover for her. She was a middle-aged black single mother dying of diabetes. She’d already had rejected one kidney transplant, couldn’t find another match and was automatically at the bottom of the list because of the rejection, and was now dependent on peritoneal self-dialysis which she did in the lunch room while she ate her sandwich. The City would not give her a disability pension and her fellow clerks had already donated weeks of extra vacation to preserve her salary. Many days she would simply put her head on her desk and moan. This to me is diabetes. I don’t need to be threatened. Many of my Blackfeet friends have died of diabetes. I know it can be deadly.
I need reassurance and so does my diabetic buddy here in town. But neither of us can find a doctor who is straightforward and informed on the subject. Great Falls has plastic surgeons and bariatric doctors, but no diabetes specialist or dermatologist (in spite of high skin cancer rates). If our readings go up to 140 or 150, we wonder if we’ve just knocked a month off our life-spans or endangered our toes. If they went up to 200 we’d head to the emergency room! But how low can we go before we pass out? “D for D” says, “Oh, most people would agree that 60 is about the lowest you should go.” I’ve only gone that low twice in a year. Here’s a comparison: The rules for pilots are:
1. No more than one hypoglycemic loss of consciousness in the previous five years and one year of stability after that one incident.
2. Evaluation by a specialist every three months and multiple readings every day.
3. Carrying a meter in flight along with quick treatment stuff for hypoglycemia. A test showing a reading between 100 and 300 (What? I thought your head would blow off at 300!!) a half hour before takeoff, every hour of the flight, and a half-hour before landing!
Well, that puts it into perspective, doesn’t it? That’s got to be TIGHT and state of the art. (Don’t bother to do this if you’re an ex-governor of South Dakota and might need an excuse for a fatal traffic accident.) Incidentally, if you’re injecting insulin, there are special regs for even being a PASSENGER and carrying the equipment. (You’d better ask before you fly!) And if you’re diabetic, you can’t be in the military in the US, but you can in other countries. Don’t let THAT get around! And Doc Rubin is gutsy enough to give the levels that are probably “maintaining” for someone who will die in a few months as opposed to levels for someone who will most likely recover from whatever extra problem is weighing on them.
“D for D” has a section about kids, a section about the elderly, factoids like urine showing “spilled sugar” when the sugar reading is over 180, which is a level that could cause damage. (It didn’t in me, according to the kidney function test.) 180 is supposed to be the top limit after a meal, according to the ADA info.
Dr. Rubin is not afraid to say that information is so slippery and controversial that one can’t really trust even the fancy organizations, even ADA. (And I’ve read some interesting things about their vulnerability to high-powered pharm forces and their supposed scientific tests.) He’s loose enough to say that if someone presses food on you that you are socially obliged to eat (birthday cake just for you), you can probably get away with little damage by nibbling a corner, mushing the rest of it up and hiding it under the napkin. (Don’t slip it to the dog! Do you want the dog to develop diabetes!!) If you’re going to a fancy business meeting or a hot date in a high class restaurant, go to that place the day before and study the menu -- maybe confer with the staff. If it’s really high class, they’ll probably have a diabetic option anyway. Waiters can coach you.
These are the kinds of things a person really wants to know. Like, can I take aspirin? Yes, but it may push you towards lower readings than usual. Is cinnamon really helpful? Looks good, and what can it hurt? Will repeatedly getting woozy from hypoglycemia give you Alzheimers or kill brain cells? No. And he insists again and again that every doctor exam should include feet. In fact, there’s a little fiber one can buy that you can use to test the bottom of your feet for sensitivity, a good monitoring step. And he’ll GIVE you lots of good websites to visit.
His best advice to exercise your sense of humor as much as possible. I sure hear THAT!