Friday, April 24, 2009

Those darn needles

Because I have diabetes and do not have an insulin pump, I have to take injections. I take them before every meal, and also once at night before I go to bed. I've been doing this since I was a young child (well, except that my mother did them for me when I was very young) and to me, it's just not a big deal.

I generally don't go around flaunting my needles. I don't wave my hands in the air and say, "Look at me, I have a needle!" or "Watch me do my shot!" I don't hide it, either. I don't feel the need to go sneaking off to the bathroom to do my shot away from other people, unless of course I need to actually remove an item of clothing in order to do the shot. All of my friends know I have diabetes, and none of them have a problem with my needles.

The rare times I'm with new people, I'll try to remember to say something like, "Excuse me, does anyone here have a problem with needles? I have to do an insulin injection and I don't want to bother anyone." The last time this happened, I was at a political fundraising barbecue, and it turned out that of the people I was with, almost all of them were either nurses or other health care workers, and the one who wasn't had just come from a round of cancer treatment that she said had subjected her to plenty of needles.

Generally, when I'm out in public, I'll discreetly take my insulin pen from my purse, dial up my dose and then raise my shirt a tiny bit and stick the needle into my abdomen. Sometimes I'll roll up a sleeve and do an injection in my arm. I've had people ask me, "But what if someone else in the restaurant is afraid of needles and they see you doing your shot?" I figure that most people are going to be paying attention to their own meals and their own companions, not watching to see what the blonde woman at the next table is doing.

Shots are somethig that I need to do for my own health, something I do to literally stay alive. What if I had a fear of dogs? Should I demand that no one can bring a service dog into a restaurant where I'm eating? No, because people who have service dogs have them because they need them.

One day a couple of years ago I was eating supper in a Chinese restaurant. As I usually do, I pulled out my insulin pen and did my injection. Then I got up to go get my meal from the buffet. Someone approached me and said, "Excuse me, I just wanted to thank you." "Thank me for what?" I asked. "Thank you for being brave enough to do your insulin shot in public." "Er, you're welcome, but I don't see what's so brave about it."

Turns out this fellow had once had someone yell at him in the middle of a crowded restaurant because he had done an insulin shot in public. After that he had felt ashamed of doing his injections in public and would go do them in the bathroom. He said that seeing me do my shot made him feel better about doing his, and maybe he'd go back to doing them in public after all.

Tuesday, April 21, 2009

Diabetes is complicating

Most diabetic people know what diabetes complications are: neuropathy, nephropathy, retinopathy, etc. All those -opathies.

I would like to talk about a slightly different kind of diabetes "complication" -- the way diabetes "complicates" my life.

A few days ago my wonderful partner invited me to take an overnight trip to Vancouver with him, all expenses paid. Lovely! However, here is where the complications set in.

What do I take with me? Insulin pens, of course. Insulin. Extra insulin. Blood glucose meter. Test strips. Extra test strips. Pen needles. Yes, extra ones of those too. Glucose tablets in case of low blood sugar while on the road. A handful of granola bars and a couple of tins of so-called meal-replacement shakes (those things do not replace a meal, believe me) in case a meal gets delayed or I just get hungry in the middle of the night at the hotel. All the diabetes supplies I can carry, just for being away from home for less than 48 hours.

You never know what might happen. BC Ferries might go on a wildcat strike and shut down. Or the ferry might simply break down (they do that often enough.) We might miss our bus out to the ferry and have to spend an extra night in Vancouver. Better to have too many supplies than not enough.

That's just for an overnight trip. Imagine what I would have to do to go away for something like an entire week or more! Sadly, neither my partner nor I have the money for that right now. Who knows, maybe that's a good thing.

But really, there are "complications" that come with everyday life, not just with overnight trips, as I'm sure my fellow diabetic people know. I've written before about what happens when I forget my insulin pen. Everywhere I go, I try to remember everything I need to carry with me: insulin pen, blood test machine and test strips, glucose tablets. Maybe a snack if I'm not going to be somewhere that I can easily buy something.

I might not need to carry the amount of stuff that I would carry on an overnight (or longer) trip, but I need to carry pretty much the same things, just in smaller amounts. And I still might need extras of some of my supplies. I don't want to be drawing up an injection at dinner in the middle of a restaurant only to discover there's not enough insulin left in the pen, or taking out my blood glucose meter at work only to discover I'm out of test strips.

Then of course there are the meal planning complications. Things are somewhat easier than they were, say, ten years ago, with both faster-acting and longer-acting insulins. But having diabetes means that I do have to keep a somewhat regular schedule, and delaying or missing a meal or an injection can have some serious complications. Delaying a meal can mean low blood sugar because of lack of food, or high blood sugar because the mealtime insulin injection has been delayed.

Maybe you're spending the day/night/weekend with someone who has a completely different meal schedule from yours. They might skip breakfast, for example, and eat a bigger lunch to make up for it, but you can't skip breakfast. Or they might decide that they're not going to eat after a certain hour of the day in an effort to lose weight, and expect you to go along with that schedule when you can't.

Maybe your employer has scheduled a 7:00 a.m. meeting, which means that you might have to get out of bed and eat breakfast as early as 5:00 a.m. in order to get to work on time (depending on your commute), assuming that it's not a breakfast meeting. But lunch isn't until noon, and you have too much work to do to take a coffee break. Your breakfast time insulin isn't going to last until noon, and you're starving by 10:00 a.m. What are you going to do? This is where one of those granola bars I mentioned earlier, stored in a drawer in your desk, might come in handy.

Yes, diabetes has its complications, and it is complicated. But we do learn our own tricks to manage our way through those complications. Don't you wish we didn't have to?

Friday, April 17, 2009

Why I don't low-carb

On the many and varied diabetes forums I belong to, I see a lot of posts about what is called "low-carbing." From what I understand, that means depriving yourself of foods such as bread, rice, potatoes, pasta, pizza, tacos, fruit, most vegetables, any kind of fruit juice, and just about everything else that has any amount of sugar in it.

When I tell people that I don't do the low-carb diet, they look at me like I'm nuts before solemnly declaring that I'm going to either die or at least suffer horrible diabetes complications, even when I tell them that my hemoglobin A1C has been at or below 6.0 for at least the last ten years.

Now, don't get me wrong; I don't stuff myself with cake, pie, cookies, ice cream, etc. I try for moderation. But I refuse to deprive myself of anything. When I was a kid, diabetes seemed to be all about deprivation. You can't have this because you're a diabetic. You can't have that because you're a diabetic. Watching other people eat chocolate-chip cookies or birthday cake was torture because I couldn't have any. And I truly believed I would never be able to have any.

When I left home, I tried to be a "good" diabetic, but since I was no longer under my mother's watchful eye, I went a bit nuts. I ate anything and everything that I wanted without bothering to test my blood sugar or adjust my insulin. And my blood sugars went all over the place.

Fortunately, with the help of a sympathetic doctor and the local diabetes education clinic, I eventually got back on track. But I realized that my rebellious behaviour was a direct result of being deprived for so long.

With some help from the dietitian at the diabetes education centre, I learned how to adjust my insulin to compensate for the carbohydrates that I ate. I realized that I don't have to deprive myself. If I choose not to eat something that contains a lot of carbohydrates, it's not because I "can't." It's because I don't want to. And if other people choose to eat a low-carbohydrate diet because that is what they want, that's fine with me. I'm not going to lecture them the way I have been lectured.

People say, "But if I eat an apple, it spikes my blood sugar." Isn't that what insulin is for? If I want to eat something, I take insulin. I thought that was the whole idea of insulin.

Now, some people are trying to lose weight, and foods that are high in carbohydrates and calories might have to be avoided for that reason. But for people who aren't trying to lose weight, who don't have insulin resistance, I don't see carbohydrates are considered to be so evil. Carbohydrates are what give you energy. When your blood sugar is low, you need carbohydrates to bring it back up. (Though I once encountered a diabetic who asked, "Since I'm on a low-carb diet and can't eat sugar, can I use Splenda to treat hypoglycemia?")

I guess in the end it comes down to: whatever works for you, fine. Just don't push it on me. That's what bugs me most. One of my co-workers went on the Atkins diet and tried to push it on me every time she spoke to me. And since we caught the bus at the same bus stop, that meant that I saw her every day, and every day for close to a year, she tried to convince me that I should go on Atkins "because you're a diabetic."

Monday, April 13, 2009

Diabetes and Cats

I live with three cats -- Calli, Poupée and Chaya. You might wonder what cats have to do with diabetes. Well, I'll tell you. My cats are the closest thing I have to a continuous glucose monitor with a hypoglycemia alarm.

A few years ago my diabetes was not under such good control. I had a wonderful hemoglobin A1C, but I was having low blood sugars in my sleep, sometimes to the extent of falling out of bed and having seizures. My boyfriend recalls that one time when I had hypoglycemia I apparently asked him if I should eat Calli for lunch.

One early morning several years ago I woke up because my cat Puff (who has since passed away) kept jumping on me. She would literally jump on me, then jump off the bed, then jump up on me again. She kept doing that until I woke up and became aware that I had low blood sugar. At first I thought this was a coincidence, until she did the exact same thing the next time I had low blood sugar while I was sleeping.

Other times, Calli has woken me up when I have had low blood sugar. (We wonder if this is to stop me threatening to eat her.) She stands on my chest and starts to tap my face with her paw. If I don't respond to this treatment, she will bite my nose. Chomp! This is enough to penetrate even the worst hypoglycemic fog. Believe me, having your nose bitten hurts!

After Puff passed away two years ago, I adopted a kitten, Chaya. I no longer need a feline alarm to wake me when I have low blood sugar while I'm sleeping; since I switched from Regular insulin to NovoRapid, I have started waking up when I have hypoglycemia. But sometimes when I'm concentrating on something, I don't notice the symptoms right away.

Sometimes when I'm using the computer I get very involved in what I'm doing. If I get low blood sugar while doing this, Chaya will start putting her paws up on my lap and going, "Meow! Meow!" I'll reach down to pet her, and she'll keep going, "Meow, meow!" Sometimes she does this when I have low blood sugar; sometimes she does it just because she wants attention. I have not figured out whether it's just a coincidence that she starts behaving this way when I have low blood sugar, but it's enough to make me stop what I'm doing and test my blood sugar -- just in case!

Sunday, April 12, 2009

Diabetes and Money

It's a sad fact that the more money you have, the better you can manage your diabetes. The more money you have, the more tools are available to you.

For example, while I don't have to pay to go the doctor or spend time in hospital, I would still have to pay to have an insulin pump or a continuous glucose monitoring system. I don't currently have a job, and when I did have a job, my medical benefits were limited to $500 a year. And that was after having that job for six years with no medical benefits. An insulin pump costs around $6,000 to $7,000. There are payment plans, but since I don't have a job at the moment -- and the job I did have was seasonal -- there is no payment plan that fits me.

Currently there are no private or public insurance plans that will pay for a continuous glucose monitoring system (CGMS). The attitude of insurers seems to be that the finger-poke blood testing system works just fine and doesn't need to be replaced. The problem is that while a finger-poke blood test will tell you what your blood sugar is at any given time, it won't give you a trend. It won't tell you if your blood sugar is on the way up or on the way down, which can be very important information.

I am not one to go around saying that pharmaceutical companies are evil. They make products that I need in order to manage my diabetes, and there is no reason why they shouldn't make a profit, because they are businesses first and foremost. They aren't in it for altruistic reasons. I certainly wish their products were less expensive, but I don't expect them to give them away for free.

I think the problem is with the insurance providers, both public and private. They will almost always choose to pay for the cheapest option, regardless of whether the patient will benefit more from the more expensive option. Insurance providers don't generally look at the long term. If there is a product that is more expensive than another, it doesn't matter that that product will save money in the long run by delaying or preventing long-term diabetes health complications. All the insurance provider looks at is the up-front cost.

Being a kid with diabetes

When I was diagnosed with diabetes, things were a bit different from how they are today. There were no insulin pumps, no insulin pens (in fact, I believe disposable syringes had only recently become common) and no blood glucose meters. No one ever talked about counting carbohydrates, and all you ever heard about diabetes was "you can't eat sugar." No one ever dreamed of adjusting insulin to fit what you were eating. Instead, you adjusted what you ate to fit your insulin, and you took the exact same insulin dosage every day.

I was the only diabetic kid in my school. I'm pretty sure this made the teachers nervous. I once had to be sent home from school because one of the other kids stole my morning snack, which I needed to compensate for my breakfast-time insulin peaking at around 10:00 in the morning.

What I really hated was classroom parties. It seemed like we had those fairly often -- Christmas, Easter, Halloween, last day of school before summer holiday, other kids's birthdays. These parties always included lots of cake, or cookies, or candy, or all three. And I couldn't eat any of these things. So I was excluded. I would sit in my seat and try not to cry.

I spoke to a young diabetic woman yesterday who told me the story of one such school experience she had. She is 20 years younger than I am, but she went through the same kinds of things I went through. One time her grade one teacher handed out chocolates to all the kids for a "treat," and then gave my diabetic friend the empty chocolate box for her "treat." Can you imagine? "Here, everyone else can have chocolate, and YOU can have the empty box!"

Why couldn't the teacher have provided some sugar-free chocolate, since she knew she had a diabetic student? Or how about not giving kids candy at all, but maybe some stickers or something like that -- much healthier, doesn't single out the diabetic kid, and avoids the risk that another student or students might have food allergies.

Thursday, April 9, 2009

The highs and lows of insulin adjustments

Because I keep having low blood sugar early in the morning, I decided to reduce my dose of Lantus last night. My Autopen only adjusts by two units at a time, so I reduced my dose by two units.

At first, everything seemed great. I slept late this morning for the first time since starting Lantus without getting low blood sugar. When I woke up, my blood sugar was 5.9 mmol/l (106 mg/dl). I also managed to avoid the dawn phenomenon. I decided to add a little extra fast-acting insulin at breakfast just to be on the safe side.

Since I ate breakfast later than usual, I figured I'd have a late lunch. About an hour before lunch, I checked my blood sugar, and all was well: 6.4 mmol/l (115 mg/dl.) But when I was ready for lunch, it had gone up to 13.9 mmol/l (250 mg/dl) without my having eaten anything.

I'm going to have to talk to my endocrinologist about this when I see him next month. In the meantime, I think I'll experiment with different foods for breakfast and see if that makes a difference. And maybe I'll play with my Lantus dosage some more.

There are many things that can cause high blood sugar: too much food, not enough insulin, a rebound from a previous low blood sugar, stress, and hormones, just to name a few. I have to figure out what is causing these lunchtime high blood sugars.

Wednesday, April 8, 2009

Diabetes pet peeves

As a diabetic, I have some pet peeves. High blood sugar, low blood sugar, unexplained blood sugar swings -- all of these are familiar to people like me who have diabetes.

One of my biggest diabetes peeves is having to eat when I don't feel like it. This most often happens at night. I'm prone to hypoglycemia in the wee hours of the morning, most often between 5:00 a.m. and 7:00 a.m. So I try not to go to bed at night with a blood sugar below about 10 mmol/l (that's 180 mg/dl for the Americans.)

Last night at bedtime, my blood sugar was 6.2 mmol/l (about 112 mg/dl.) This meant that I had to eat something. But I wasn't hungry! I don't know if this happens to other people; for non-diabetics, I imagine that if you're not hungry, you just don't eat -- right? I don't always have that option.

I compromised and instead of eating, I drank a cup of fairly high-sugar hot chocolate. I hoped the chocolate would raise my blood sugar and the milk I used to make the hot chocolate would help keep my blood sugar steady throughout the night. When I woke up just before 7:00 this morning, my blood sugar was 3.4 mmol/l (about 62 mg.dl), which is just a touch on the low side. This also meant I had to get up half an hour earlier than I would normally, because my normal getting-up time on workdays is 7:30 a.m.

This brings me to another pet peeve. When you have diabetes, you can't sleep in! Doesn't matter if it's a weekend or a holiday; the diabetes doesn't take a day off. For me, I can't sleep late because my blood sugar tends to dip lower the later in the morning it gets if I don't eat breakfast. For other people, they get what's called "dawn phenomenon," which is when the liver releases glycogen (stored-up sugar) in the morning and causes the blood sugar to go up. I understand that insulin pumps might be able to help with this, because they can be pre-programmed to deliver insulin in certain amounts on a certain schedule. Unfortunately, an insulin pump is outside of my financial abilities at the moment.

For any other diabetic people reading this: what are your diabetes pet peeves?

Tuesday, April 7, 2009

Insulin and ice cream

Today was one of the first nice days we've had all year. We had an impossibly cold March with temperatures regularly dipping below freezing, and we even had snow. Some parts of the city even had snow the first week of April, so the temperature going up to 15 degrees Celsius today made me want to go out and enjoy it.So I went out to Beacon Hill Park for the first time this year.

I met my friend Jen there, and we stopped by the Beacon Drive-In for ice cream. That was when I realized I'd forgotten to bring my insulin pen with me. One would think that with all the years I've had diabetes, it would be a habit -- leave the apartment, bring insulin pen. Sadly, it is not. I had the ice cream anyway, figuring that the fat content of the ice cream would delay my blood sugar rising long enough for me to go home and take my injection.

Of course, the best-laid plans of mice, men and diabetic people go oft awry, and that was the case in this instance. Jen and I hadn't seen each other in awhile, and we had a lot of catching up to do. So we stayed at the drive-in for quite some time. Then we had a walk to the bus stop, and then I had to stop at the supermarket to buy ingredients for a pasta salad I'm making for a potluck we're having at work tomorrow to mark our last day of work till the fall.

By the time I got home my blood sugar was 17.1 mmol/l (that's 307 mg/dl for the Americans). I decided to delay my supper for a while (since I wasn't hungry anyway) and took a bolus injection of insulin. Two hours later, when I sat down to supper, my blood sugar had come down to a nice, normal 5.5 mmol/l (99 mg/dl). For once I actually managed to calculate my insulin bolus correctly and didn't go too low.

The moral of this story is that while I can eat anything I want as long as I take enough insulin to cover the carbohydrate content, I need to actually have my insulin with me in order to do that. Oh, and also: don't rely on the fat content of a food to keep my blood sugar from rising.

Monday, April 6, 2009

Introduction

Welcome to my diabeteblog. I'm rainbow. I'm 40 years old, and I've had Type 1 diabetes since I was four years old. I did not get diabetes because I was fat, because I was inactive, or because I ate too much sugar.

No one is quite sure why I got diabetes, but the prevailing theory is that it was due to an autoimmune reaction caused by a case of the mumps. My body created antibodies that for some still-unknown reason attacked the beta cells in my pancreas instead of attacking the mumps virus.

I had all the usual symptoms: rapid weight loss, fatigue, extreme thirst, numerous trips to the bathroom to pee. My mother tried to deny there was anything wrong with me. She'd try to forbid me to drink water, leading me to sneak into the bathroom in the middle of the night to drink straight from the tap. My dad tried to talk to her about it; he'd seen public-service announcements on TV from the Canadian Diabetic Association that described my symptoms perfectly, but my mother ignored him. She didn't want there to be something wrong with me, and she was scared.

One day my parents took all of kids to visit a family friend. My brother and sister immediately went out to play with the friend's kids. They were outside running around, while I was lying listlessly on the couch. My parents tried to persuade me to go join the other kids, but I was almost totally unresponsive. This, according to my dad, was the turning point. He was quite certain now that something was seriously wrong with me.

The next day at home I was again lying on the couch and not moving. My dad picked me up, carried me to the car and announced that we were going to the hospital. I guess my mum didn't have any choice but to go along! Once I was there the diagnosis was immediate: juvenile diabetes. The nurses had trouble starting an IV in my arm because my veins were so small. My dad remembers watching them poke my arm several times trying to hit a vein with the IV needle, and me not even whimpering. He says that scared him half to death.

I was in the hospital for a week, and then I went home to discover that everything had changed. Suddenly I had to have shots every day. I couldn't eat candy or chocolate bars. My mother took care of my diet, my shots, and the awful urine tests that had to be done four times a day until I was old enough to do it myself.

That was 36 years ago. Things have changed since then, mainly for the better; there are newer types of insulin, and urine tests are mostly a thing of the past. But there are times when I find myself thinking: "Okay, why haven't they found a cure yet?"