Diabetes history

I was diagnosed with juvenile diabetes in 1973. I was five years old. There were no blood glucose meters. There was no A1C test. There were urine tests before every meal, and there was a fasting blood sugar done at the hospital every few months. Injections were done with a syringe, once a day, using Toronto insulin and Lente insulin. (I think I switched to two injections a day when I was 16.) The word "carbohydrate" was never mentioned; instead, we had food exchanges. Half a banana was one fruit exchange. (Half of what size of banana? Well, that was guesswork.) Half a cup of milk was a milk exchange. A certain amount of cereal -- not a lot of choice there, either -- was a starch exchange. The exact measurement was found in a book with some original title like "The Diabetic Diet." It had a blue and yellow cover and was spiral-bound.

There was some "diet" food available. I could drink Tab, Fresca or Bubble Up. There were a few sugarless candies available. That was until the Canadian government decided to ban saccharin. Suddenly there was no diet pop, no sugarless gum, no sugarless candy. I drank Kool-Aid prepared with Sugar Twin, which was cyclamate. There was no Equal or aspartame, no Splenda or sucralose.

I went to summer camp four times, sponsored by the Canadian Diabetes Association. There were three or four other diabetic kids my age in my hometown, and we all had the same doctor, who made an effort to get us together every so often, and we all travelled to camp together. Diabetes camp was really just like any other summer camp, with the exception that we all had diabetes and the counsellors had to carry emergency sugar supplies with them. We went swimming and boating, hiking and camping, made arts and crafts and had dances.

When I was 13, which would have been in 1981, I saw a blood glucose meter for the first time. It was about the size of a hardcover book, took a large amount of blood from your finger, and had a pointer on a dial that showed approximately what range your blood sugar was in. At that point we were still all doing urine tests, and four times a day there would be two campers assigned to do the tests for each group. Take two drops of urine, add ten drops of water, drop in a Clinitest tablet and watch the chemical reaction take place.

By my third time at camp, when I was 15, we were all using blood glucose meters -- Glucoscan or Glucometer. These were sophisticated machines for their time! They were now about the size of a paperback book instead of a hardcover. The lancing device was a nasty little thing called an Autolet. (See a picture of it here.) The drop of blood was still pretty big, and you had to wait 60 seconds (the machine would sound a buzzer) and rinse off the strip with a special bottle of water before putting it in the machine. It then gave you a digital readout. This was a big improvement over urine tests. Aspartame became available around this time too, and we now had sugar-free pop again, including Diet Coke. For the first few years, though, products made with aspartame were more expensive than their sugar-containing counterparts.

When I was in my teens I had to spend some time in the hospital. I got my tonsils out, was admitted for nausea and vomiting because I couldn't keep my blood sugar under control when I couldn't eat, and had dental surgery. Each time I was admitted, I wound up teaching the nursing staff how to use the blood glucose monitor and how to mix two types of insulin in one syringe so that I didn't have to take extra needles.

By the time I was in university I was taking two shots a day -- still Lente and Toronto -- and the blood glucose monitor was now the Glucoscan II (image) and no longer required rinsing. Now it used a slightly smaller drop of blood. It still required a countdown, but now you had to blot the blood on a special pad before inserting into the machine. It was still about as big as a paperback book.

When I finished university in the early 1990s my insulin changed from beef-pork insulin to synthetic "human" insulin, or Humulin. I now took Humulin R and Humulin L, and a newer blood test machine that now read in mmol/l instead of mg/dl and required neither rinsing nor blotting of the strips. (Sadly, I can't remember the name.) Unfortunately, it was around this time that I became unemployed and had to go on welfare. Due to a poorly informed case worker and my being so shy and timid that I didn't dare speak up for myself or contest what I was told, I was left with the impression that my diabetes supplies would not be paid for by the welfare program, and I wound up reusing my syringes, taking as little insulin as I could get away with, and never testing my blood sugar. To make things worse, the company making my blood glucose meter discontinued it, and the strips were soon impossible to find.

Fortunately, in the mid-90s I discovered the diabetes clinic at the Royal Jubilee Hospital, and I also got a better caseworker for the welfare benefits. The diabetes clinic supplied me with my first One Touch blood glucose meter (image), and the caseworker got my medical supplies paid for.

One day around 1995 or so, I went to the pharmacy to pick up my prescriptions as usual, and the pharmacist asked me if I would like to try an insulin pen made by the Novolin company. I was intrigued by this new device. Sadly, there wasn't one for Lente insulin, but I started using it for my Toronto insulin. In 1997 I went on disability, which guaranteed that my medical benefits would stay in place.

It was in 1999 that I changed insulin for the first time since 1973. I switched from Lente to NPH insulin. Now I could use an insulin pen for that insulin too. A few years after that, in the early 21st century, I changed from using Toronto (Regular) insulin to NovoRapid. A few years after that, I went on Lantus insulin. My cat was also diagnosed with diabetes, of the feline variety, and now we both take Lantus -- me once a day, and my cat twice a day. I also went through a few more glucose meters, all from Lifescan -- the Fast Take, the Ultra and the Ultra Smart.

Today I am no longer on welfare or disability. I have a job now. I still use insulin pens, and now I use a One Touch Ultra Smart for my glucose meter, alternating with an Ultra Mini that I carry in my purse for convenience. I've tried almost every diabetes gadget under the sun except for the insulin pump and the continuous glucose monitor, both of which are out of my price range and neither of which is covered by public medical insurance and the medical benefits I get from my job only go up to $500 a year.

The problem of blame

We diabetic people are pretty familiar with the blame game. People like to blame us for our disease. "You ate too much sugar." "If you lost weight, your diabetes would go away." "Well, that's what you get for being fat and lazy."

None of this applies to people with Type 1 diabetes, of course, though we get lumped into this all the time. But it doesn't always apply to people with Type 2 diabetes, either. Not everyone with a diagnosis of Type 2 got it from being fat or lazy. For many people it was just the luck of the genetic draw. If your grandparent and/or parent had Type 2 diabetes, there's a good chance you'll get it eventually ,too, regardless of your weight or physical fitness level. There are also people who get Type 2 diabetes as a side effect of having another medical condition, such as polycystic ovarian syndrome, or whose weight gain was caused by a particular medication they were on. Many antidepressants and other psychiatric medications have weight gain as a side effect.

Even if a person did get Type 2 diabetes because of their weight, it's not helpful or supportive to keep blaming the person. I'm sure they didn't wake up one day and say, "Hey, I think I'm going to be fat now. I love being ridiculed by the general public and blamed for everything that's wrong with the health care system and demonized by the media." Telling a person that he or she got diabetes from being overweight isn't going to make their weight magically drop overnight, nor will telling them that their diabetes will go away if they lose it. (It won't, by the way. The person may be asymptomatic, but the diabetes will always be there, regardless of what Drew Carey or the latest celebrity with diabetes says.)

I mentioned the media. They're the ones who are largely to blame for this. Some 99 percent of the news stories about diabetes mention weight. I follow lots of diabetes "news" sources on Twitter and almost all of them are full of articles about diabetes and weight. The media just eats up stories about fat people, for some reason. Obesity + diabetes makes a good sound byte, I guess. News stories are limited for time (TV and radio) and space (newspapers and websites) so they can't go in to the very complex causes of diabetes. I doubt many of them have ever heard the term "autoimmune disease" or even know that there is more than one type of diabetes, let alone several types.

While diabetes seems to be the favourite target of the blame game, some other diseases get it too. Lung cancer is another popular target. I remember when some minor celebrity died of lung cancer. I mentioned on an online discussion forum that this person was not a smoker, so therefore we can't blame all cases of lung cancer on cigarettes. Well, I was immediately pounced on by people who told me that obviously, shne must have smoked at SOME point in her life; either that, or she had lived with smokers long enough to be exposed to enough secondhand smoke to develop lung cancer.

Why do people like to play the blame game? Well, I think for many it comes down to fear. If I'm afraid I'll get a particular disease, I can look around and say, "Well, I don't smoke," or "I'm not overweight," or "I don't eat junk food," or "I exercise regularly," therefore I won't get that disease, unlike the people who do smoke or who are overweight or who eat junk food or who don't exercise. It's probably reassuring in a way.

Then again, some people just like to make themselves look better than other people. I have encountered some people with Type 1 diabetes who consider themselves superior to those with Type 2 because we didn't get our disease from being fat.

I think in the end we all want the same thing: a cure for all types of diabetes. Unfortunately, the "blame game" stands in the way of that by making the general public think that if people just lost weight, their diabetes would be "cured" and that getting diabetes is our own fault, and if we just lived healthier lives we wouldn't get sick in the first place. So why donate money to research a disease that can be "cured" so easily?

World Diabetes Day & Me

Today, November 14, was World Diabetes Day. I was aware of it, but I didn't do anything to mark it. There wasn't anything happening in my community to mark WDD, perhaps because it was a Sunday. There were no walks, no rides, no buildings or monuments being lit up. (One of the ways that many places mark World Diabetes Day is by lighting up specific buildings or monuments in blue, because blue is the colour of World Diabetes Day.)

Sundays are usually pretty quiet days for me. I seldom go out. So I didn't even have a chance to wear blue today.

I tried to take part in the "Big Blue Test" but I didn't manage even that. For the Big Blue Test you were supposed to test your blood sugar at 2 p.m. your time, then do 15 minutes of exercise and test again. I tested at about 1:55 and found that my blood sugar was 3.7. That's too low for exercise, so I didn't do any.

Some people were doing a diabetes scavenger hunt, with the idea being that you organize a team, take pictures of specific items and then post them to a certain web page. But I found out about this only the night before, which was too late to organize a team, even if I knew enough fellow people with diabetes to do so. The only diabetic people I know are the ones on Twitter. My boyfriend didn't want to go out today.

Next year I'm going to try to get a jump on World Diabetes Day. I don't know how yet, but I'm going to do some research to find out if there is a way to organize people to do something to mark the day and get something lit up in blue. Unfortunately it's a work day next year, being on a Monday, so that will limit my options.

Don't forget to eat!

When I left home more than 20 years ago to live on my own, one of the pieces of advice my mother gave me was "Don't forget to eat!" I didn't say anything to my mother, but at the time I thought that was pretty silly advice. Who forgets to eat?

Apparently I do.

This morning I got out of bed around 9:00 a.m. and sat down at the computer. I started eating an orange, and I figured I'd better take my insulin to cover the orange as well as the bowl of oatmeal I planned to eat after I'd finished eating the orange. So I calculated my dose, and I did the injection.

Now, it just so happens that there are these games I like to play on the internet. They're on Facebook. They're called Farmtown and Farmville. They are highly addictive little games. I play both of them first thing every morning, and can easily spend an hour between the two of them. This is what I was doing while I was eating my orange and injecting my insulin. This could have had something to do with what happened.

About an hour and a half to two hours after I injected the insulin, I noticed that I was feeling a little bit lightheaded. At first I shook it off; I figured I was just expecting to have low blood sugar because I'd had it the day before between breakfast and lunch, but today I'd lowered the dose of insulin to make sure that didn't happen again.

But I still felt lightheaded and a little dizzy. I was just about to go find my blood glucose monitor when something occurred to me.

What happened to that bowl of oatmeal I bolused for?

I looked in the sink. No dirty bowl in the sink.

I thought back. Did I remember boiling the water? Did I remember mixing the oatmeal in the the bowl?

I did not.

Yes, somehow I managed to forget to eat my breakfast. When the little blotches of light started appearing in front of my eyes, I grabbed a can of Coke and gulped it down.

Then I prepared and ate my overdue bowl of oatmeal.

Sorry, Mum. Guess you had good advice for me after all!

Su

Diabetes and income

A new study has found that people with lower incomes are more likely to die of diabetes complications compared to people with higher incomes. And this is in Canada, where we have "free" health care.

Part of the problem, I think, is that different provinces choose what drugs and supplies to cover on their prescription drug plans. Some provinces don't even cover insulin; others don't cover test strips. Some don't cover syringes and needles. When I was forced to go on welfare, I had one social worker tell me that "We're afraid you'll sell them to drug addicts, so we won't pay for your needles. You'll have to pay for them out of your own pocket." (I later found out that this was not the case, but at the time I figured that someone who worked for the government knew what she was talking about.) Diabetic people can drop off used needles at the needle exchange, but cannot pick up clean needles the way drug addicts can.

I thought that living in B.C. sucked, but I have to admit that Pharmacare does cover almost all diabetes supplies. They don't cover insulin pumps, and they don't cover Levemir insulin, but they do cover Lantus. They don't cover 100 percent of the cost of NovoRapid or Humalog, unfortunately, and I had a big problem when I was on disability and trying, out of my very limited income, to cover the portion of NovoRapid that the government doesn't pay for.

I think that another part of the problem is stigma. Diabetes has a very big stigma in our society. People with diabetes are considered to be fat and lazy. "Just lose weight, and your diabetes will go away." People don't want to admit to having diabetes, so they don't. They don't test their blood sugar, they don't take their medication, and they don't follow a proper diet. They probably don't talk to or listen to their doctors, either. Some people who are diagnosed later in life are just set in their ways and don't want to change.

I think this stigma is also part of the reason that governments don't want to pay for diabetes supplies. Who needs expensive insulin, test strips, oral medications or needles when all you have to do is exercise more, eat a healthier diet, and lose weight to get rid of your disease? Anytime I've heard provincial politicians talk about diabetes, they've all mentioned obesity, inactivity and unhealthy lifestyles. They refuse to acknowledge that not everyone who has diabetes, whether it's type 1 or type 2, has it because of weight or lifestyle. It's easier to blame everything on the diabetic person themselves.

It has also been noted that poor people usually live "unhealthy" lifestyles. When you're getting most or all of your food from a food bank, you aren't getting fresh fruits and vegetables. They're perishable. The food bank stocks non-perishable food. You're likely to be getting cereals, pasta, rice, Kraft Dinner and canned soups with a lot of chemical preservatives in them. The vegetables you get are probably canned and probably also contain lots of preservatives. So people who use food banks are getting a lot of starchy, high-carbohydrate food. But as the old saying goes, beggars can't be choosers.

People on income assistance in British Columbia can get an extra $15 a month for special dietary requirements if they have diabetes. This is just a drop in the proverbial bucket. It's not going to get you much, if any, extra food, especially if all of your money is going to keep the rent paid and the hydro turned on. Also, you have to re-establish your eligibility for this extra money every few months, in case you "get better" and your diabetes suddenly goes away. I told the case worker at the disability office that my diabetes is not going to suddenly go away after 35 years; she said, "But it could improve." Not that much, lady.

So what can be done about this problem? Well, the first thing, I think, is for governments to get their collective heads out of their collective asses and make sure that all people with diabetes have access to the prescription drugs and supplies that they need. All essential diabetes supplies need to be covered by provincial prescription drug plans.

Governments also need to stop blaming people for causing their own diabetes. The media could play a part in this too, by not conjoining "diabetes" and "obesity" (or even worse, using the word "diabesity") in every newspaper and magazine article and television news broadcast.

When a person is diagnosed with diabetes, he or she needs to be educated about how serious diabetes can be and why it is essential that it not be ignored. I don't advocate scare tactics, but people need to be aware of what the consequences of improper diabetes care can be. However, doctors need to stop making it sound like insulin is some sort of punishment for "bad" diabetics; I've heard from many people with Type 2 who think that having to go on insulin is some sort of failure, and they resist taking it.

I think that gyms and recreation centres should be more accessible to people with low incomes. It can be very difficult for people to exercise outdoors in winter in many parts of this country, unless they have the financial means to do things such as skiing. Being able to go to a rec centre and use a swimming pool or a skating rink or an exercise room would be beneficial not only for people with diabetes, but for lots of other low-income people as well. Regular exercise can help prevent Type 2 diabetes, and it has many other physical and mental health benefits as well.

To sum up, it is not surprising that people with low incomes are more likely to fall prey to diabetes complications. People need to rethink their views of diabetes to help combat this inequality.

Getting the munchies

When I'm at work, I tend to get the munchies. I don't know why the urge to snack comes over me more often at work than it does at home, but when I'm at work I really, really want to snack the day away.

Unfortunately, my snacking choices tend to be really high-calorie, high-carbohydrate foods such as muffins, chocolate bars or potato chips. None of those is a very good choice when I'm spending my day sitting in front of a computer, moving only to go the washroom or to grab a cup of coffee from the kitchen.

Last weekend when I was shopping I decided to look for better snack options. I found some mini rice cakes that came in flavours like chocolate, caramel, cinnamon and peanut butter. The cakes are packed into little pouches, and each pouch has about 15 grams of carbohydrate. "Oh, those look good," I thought, "and they're not super-high in carbohydrates."

So what happened? I bought a box, I took the box to work with me, and I ended up downing three pouches of rice cakes in about ten minutes, requiring an insulin bolus. It's one thing to eat a snack that has 15 grams of carbs; it's another to eat a snack that has 45 grams of carbs.

I'm not exactly a low-carber, but I try to be sensible about what I eat. And eating three bags of rice cakes is probably not terribly sensible of me.

The problem of cheating

A couple of days after Halloween I saw a post on a diabetes forum that asked: "Did you cheat this weekend?" "Cheating" in that context referred to eating Halloween candy.

I objected to the wording, and it was revised to "Did you give in to temptation?" A better choice of words, perhaps, but it got me thinking about the concept of "cheating."

I've often heard both diabetic and non-diabetic people refer to "cheating on my diet." This means eating something that is apparently forbidden; you can't have food that you might actually LIKE to eat. That would be cheating. You're supposed to give up sweets. No chocolate. No candy. No ice cream. No cake, cookies or pie. No juice or regular (non-diet) pop. Some people give up bread, pasta and potatoes.

Now, I'm not going to deny that all of those foods are pretty darn high in carbohydrates and/or sugar or that they can be pretty tough on diabetes control.

My problem is in making any food seem "forbidden" so that if you eat it, you are "cheating." Cheating makes you feel guilty. Cheating is a bad thing. It's something you do in secret. You don't talk about it.

Other people make you feel bad about it, too. My ex-girlfriend used to go online and post to various discussion forums about how I was a bad diabetic because I dared to eat an ice cream cone. Other people point and laugh at the person who orders a burger and fries and a Diet Coke "as if the Diet Coke is going to cancel out all the calories in the burger and fries" without knowing that maybe the person who ordered that food is not counting calories, but carbohydrates.

I don't think there is anything wrong with eating that Halloween-size chocolate bar, or having a piece of cake at your friend's birthday party, or a piece of pumpkin pie at Thanksgiving dinner, or an ice cream cone on a hot day, as long as you know how to calculate enough insulin or exercise to cover for it. I remember one summer afternoon when I had an ice cream cone at the recently opened Ben & Jerry's stand at the mall; I fully intended to give myself some insulin to cover for it, but I was waiting for the effects of the fat in the ice cream to wear off first, because the fat delays the carbohydrates making your blood sugar rise. Well, I did so much walking that afternoon that my blood sugar never did rise, so I didn't need to take that extra insulin after all.

Calling something "cheating" gives it a stigma. It makes us ashamed of eating that chocolate, pie, ice cream, whatever. It makes us hide what we're doing instead of asking for help: how do I calculate the carbs in this piece of birthday cake? How long after eating this ice cream should I take this insulin bolus? I think maybe I'm eating too much pie, cake, ice cream, chocolate -- what should I do?

As I've said before in this blog, I don't advocate eating piles of cake, cookies, candy, chocolate, etc. I believe in moderation. What I don't believe in is self-denial. Denial and deprivation can lead to binging. I found this blog that talks about the "deprivation binge." Quote: "when certain foods are restricted because they are ‘bad’ or ‘forbidden’, tension builds up and a breaking point is eventually reached with a binge."

I think that is one of the biggest reasons to get rid of that "cheating" stigma. Binge eating is bad for everyone, but it can be especially bad for a person who has diabetes.