The preceding five years were far from perfect; struggling with an eating disorder does not a healthy diabetic make. But I really tried. And the motivation to really try was the belief (encouraged by my doctors) that a cure was imminent. When that belief evaporated, so did my motivation. I have been trying ever since to get it back (with varying degrees of success).

Picture the strictest diet you've ever been on. The one where you put no sugar or milk in your coffee or tea. When you measured out your foods using a kitchen scale and measuring cups. When you didn't have ketchup because you couldn't count the calories. Where you read the labels on cookies and chocolate bars, cut your bananas in half before eating them, bought special cookbooks and cooked things according to precise directions and scooped out only the serving size given by the recipe.

Now imagine that it never ended. It's not three weeks or three months and then back to a more regular eating pattern; it's years and years of counting and measuring and scooping and saying no. No breaks. No time off. No "just this once."

Now imagine that it doesn't work.

Imagine that for years you've done this, not perfectly, but as well as you could. Imagine that yesterday every gram of carbohydrate you ingested was carefully counted and eaten on schedule. Imagine that you took your shots and tested your blood sugars and all day yesterday the numbers were between 4 and 5 mmol. Imagine that you woke up this morning and it was 4.6; you measured your one cup of sugar-free cereal, your one cup of 1% milk, and ate it all; you had your four soda crackers and two pieces of cheddar cheese as a mid-morning snack; and now it's lunch, and your blood sugar is 13.2.

That is the worst part of being diabetic, at least in the stage I'm in (what I sometimes refer to as "pre-disabled," since something like 90% of type 1s will eventually have complications). That you do everything right, you measure and say no and count and shoot and test and record, and it just doesn't work. That this "manageable" disease, this disease that can be "controlled," will not be controlled after all, no matter how hard you work. Like that woman I knew when I was pregnant, who despite excellent blood sugar control, still almost went blind while she was pregnant.

Being a diabetc on insulin shots feels sometimes like waging a war against a fleet of tanks armed with a slingshot. You know you're going to lose. You can keep ahead of them for a long time if you're smart and put everything you've got into it; but eventually, you're going to lose.

At least having a pump is like having a slightly better weapon and a get-away car; I still know I'm going to lose someday, but hopefully a bit farther off and with less effort in the meantime.

But in some ways, I am already losing, and I know it.

There are the little things, like pricking myself for a blood sample and getting one that's too small, so I prick again and get a bigger one but smear it on the pricker before I can get it on the test strip, so I have to prick again, and then it's on the test strip which for some reason today doesn't work, so I have to throw out that $1 strip and get another $1 strip and start the whole thing all over again. And spend the rest of the day with a bruised fingertip. Or the insulin reservoir for the pump that doesn't want to fill.

Some sadistic freak decided that the way to provide skinnier people with more comfortable pump sites was to create pins three times as long that you can put it on an angle. I actually bought this load of horseshit for a long time (wouldn't they know? They designed them, right?) and used these, and if you're feeling particularly adventurous, try sterilizing a fabric pin and sticking it into your stomach.

There's no painless way to do that. Many was the evening spent swearing in the bathroom as I tried to work one in to a monologue: "OWOWOWOWOW just get in OW dammitdammitdammit fuck just get IN." And then, from time to time, that didn't work either; I'd finally get the damned thing in only to find out that the angle was too shallow, and I could see it bulging through my skin. The thought of it possibly ripping through my stomach was, needless to say, worse than the thought of doing it again; so out it would come.

I switched to the one for non-skinny people and it's much more comfortable, but if I insert it in my stomach the insulin pump will "fail" and I'll have to start all over again. So I use them, but only in my hips.

There are the times when the plastic tubing gets caught on a doorknob and rips out. Which doesn't hurt much, but does cost me another $28 (less insurance coverage) for a new set. There was the time when my pump stopped working, and I had to manage for 24 frantic hours with a malfunctioning pump and a few syringe shots before the replacement arrived. My blood sugar got up over 20 that day.

But these are all really minor things, the day-to-day irritants of living with this chronic illness. Worse is knowing that despite all my efforts I am getting sicker.

It's not something I talk about much in my real life, as I hate perpetuating the idea that diabetics are disabled and I don't want my employer (for instance) deciding I am too fragile to do my work. But there are niggling premonitions of things to come, and I know--I know--that really I am lucky, because by now for many type 1 diabetics it is no longer a premonition but a fact.

When I was working with a rail company in my early twenties, I used to go on a lot of business trips, and most of them involved long drives. It was on one of these (to Sudbury) that I noticed that my right leg was tingling and twitchy below the knee.

It came and went, only noticeable really when I was driving, but having a bum right leg in the driver's seat can be a bit of a problem. Eventually I dragged myself to the doctor.

She bit her lip and said, "I think it might be the diabetes."

I was shocked. "Oh."

"You have good control, right?"

I nodded my head.

With anxiety all over her face she wrote out a referral to see a nerve specialist for a test, and I went home and cursed God. I'm not being melodramatic to say that. I tried so hard to stay healthy, and it got me anyway.

The day of the test arrived, and I showed up at the hospital and put on one of those lovely butt-baring gowns. The test itself involved lying down while the specialist inserted ten-inch long pins into my legs attached to electric current and jolted me to see if I felt something. If it sounds hideous, that's because it was.

"What's the matter?" he asked. "I thought you'd be used to needles by now!"

Lovely bedside manner. LOVELY. These things were "needles" in the same way Bill Gates is "well-to-do." I guess he's used to people whose nerve endings have so seriously deteriorated that they don't feel it. I felt it.

"Well," he said, "Your nerves are fine. I think it's a pinched nerve. Diabetics are more susceptible to that. But it's not serious."

It has never gone away. As a matter of fact, my leg is tingly and twitchy as I type this. This makes me incredibly lucky for a type 1. Diabetic for thirteen years, and all I have is a pinched nerve and a bit of collagen deterioration? I would estimate that fewer than 5% of type 1 diabetics can claim to be free of complications for that long.

But with that pins-and-needles feeling following me around all the time, it's impossible not to wonder exactly how long my luck is going to hold out. It's impossible not to wonder if I am sicker than I know, if some of my body's systems have started to deteriorate at a level that can't be picked up yet. It's morbid, it's stupid, but I can't help it.

I am not asking anyone to feel badly for me. Gods know that in the Big List of Bad Things, Type 1 diabetes is not anywhere close to the worst thing that can happen to a person. But it is my hope that anyone who has read all my ranting and rambling will be a bit better equipped to spot to misconceptions when they see them. That you will know that diabetes is only truly "manageable" for people who have the self-control and asceticism of a saint, and even then there are days when controlling your blood sugar is like shaving with a sausage casing; that it is a complex disease requiring constant daily management that intrudes itself into all of your decisions, big and small; that the health effects are severe and largely unnecessary given current treatment options, except for the expense; that your wealth will define the length and quality of your life; that no one does anything to "catch" it.

It is my hope that if you are someday part of a conversation where a person self-righteously announces that her neighbour's child was drinking too much soda, and now he's got diabetes, and you told that mother that it was too much soda, that you'll speak up and mention that juvenile diabetes has nothing to do with soda consumption or any lifestyle habits. It is my hope that the next time you see a movie (like that old one starring Michael J. Fox, I can't remember the name of it) with a character who says, "I'm diabetic, and my blood sugar is going low. Let's go out for dinner," that you'll recognize it as a plot device resembling real life for diabetics about as much as Vogue represents real life for women (hint: If your blood sugar is low, you need to eat immediately. Taking the time to find a restaurant, order and wait for it to be served, is practically guaranteeing oneself a ride in the ambulance). It is my hope that the next time you hear someone say that diabetes is "no big deal" or that it's "manageable," you'll recognize that for ignorance.

It is my hope too that you will understand me when I say that what I and millions of other type 1 diabetics around the world truly need and deserve is a cure. You know, the one that was promised to me thirteen years ago.

My insulin pump is a godsend, it really is, compared to a life lived on the insulin schedule. It is as normal as I have been for thirteen years. But it's not really normal; the expense, the monitoring, the counting of carbs, the doctor's visits, the tests, the constant background worry, the way you decide everything from lunch to wardrobe to job offers to where to live based on its limitations--it's not normal. It's not a normal life.

My pump is good for one thing: Getting me to finish line in as close to good health as I am capable of being. Period. Because although I have given up hope of anyone finding a cure quickly, I still hope and believe that a cure will be found in my lifetime and, gods willing, in time enough to spare anyone I love from living with this disease.

What I want is to walk into a hospital one day, walk out again, and throw the meter and the test strips away. Pulverize my insulin pump with a sledgehammer. Go on a run because I feel like it. Never count carbs again. Wear a nice dress, without worrying about where to hide the pump. Pour the insulin down the sink. Eat all the sugar candies in one big binge, and never buy another one. Spend the extra $100 every month on good books or a dinner out or hey, give it to charity, maybe. Look forward to a future and an old age without fear. Take a job because it sounds fabulous and interesting, not because of the health policy; turn down a job because I don't want it, and not because the health coverage sucks or it's a small non-profit and I don't think they can afford me. Never again have a low-sugar hangover. Set fire to the infusion sets in the backyard. Never again wake up at 2:00 am hot, sweaty, hungry, shaky and with tingling lips from a suddenly plunging blood sugar. Actually save for retirement because there's a point in doing so.

That's what I want. One of the disadvantages (the only disadvantage, maybe) of having been diagnosed at 17 is that I still remember that. Every time I read in the newspaper about a new trial for a possible cure, my breath catches in my throat--I haven't stopped waiting for it.

What I want--what every type 1 in the world deserves--is a cure; and all the fanciest treatments are just better ways of getting there in better shape.

This is where I bite the hand that feeds me:

The big diabetes organizations do a terrible job of this, IMO. Just about the only thing the Canadian Diabetes Association is doing for Type 1s these days is trying to get us a disability tax break--something I am none too keen on. Oh, the extra money would be nice to pay for all the stuff I need, but disability? I'm not disabled. It makes so much more sense to get this disease and the medical supplies covered under the provincial health plans than it does to get a back-door tax break through claiming we are all disabled, but they've been plugging away for years on this. Any kind of funding for research on a cure is way down on their priority list. They are focused on the 90%+ of their members who are Type 2.

The American Diabetes Association at least has a research section on their website, but this was all I could find relating to a cure for type 1 diabetes.

The Juvenile Diabetes Research Foundation is the only organization I know of that is dedicated to finding a cure for type 1 diabetes through research. So now they are the only ones I donate to.

This is not to say that the CDA or ADA are bad organizations; they're not. They're focused on the majority of their membership, who are Type 2s. If Type 2 is where your concern lies, that's where you want to donate. But if you are interested in making a difference in the lives of Type 1s, in my opinion, the JDRF (and its various national groups) is the way to go.

There are several potential cures on the horizon: islet transplantation; beta cell regeneration; vaccines/prevention; and artificial pancreases.

The essential problem is this: Type 1 diabetes is an autoimmune disorder. The immune system remains disturbed. If you simply put a new pancreas in a person with diabetes, there is every chance and likelihood that that pancreas too will be destroyed. Hence the necessity for immunosuppression drugs beyond what are called for with most transplants. This is where many of the cures are currently foundering: They can put new islet cells into people with diabetes, and those cells begin producing insulin. But how do you keep the white blood cells from destroying them again?

A quick and dirty summary on the main research theories and treatments currently being tested:

Islet Transplantation without the need for immunosuppression:

Islet transplants have undergone human trials, as in the famous Edmonton Protocol. The problem is that within a few years, only 20% of recipients are still insulin-free--the rest have suffered some degeneration of the transplanted cells. This can be prevented by the use of harsh immunosuppression drugs, but the side effects of those drugs are usually worse than the diabetes. Research is now underway in developing immunosuppression therapies that are less harmful and increasing the success rate of the transplants.

But as you can see, this is not going quickly. I've been hearing about this possibility for the last ten years, and the Edmonton Protocol was developed in 1999. It's been six years of human trials and while there has been improvement, it is obviously still far from the day when hospitals will throw their doors wide open and post a "DIABETES CURE HERE" sign.

Increasing the supply of islet cells:

Since many of you are familiar already with the intricacies of organ donation and the shortage of available organs from Moreena's blog, I won't go into it here--but suffice it to say that there aren't a whole lot of pancreases out there with oodles of islet cells that can be transplanted into people. If this is going to be a cure, they need more cells.

This is where stem cell research comes in, which can generate islet cells for transplantation. The above hurdles re: immunosuppression would still exist, but without a viable supply of islet cells, the cure won't go anywhere.

Regenerating the body's own beta cells (islet cells)/vaccine:

There is research underway that is demonstrating that it is possible to encourage a person's pancreas to regenerate their own islet cells. The benefit of this is that actual rejection of foreign tissue would be avoided, but of course, the autoimmune destruction of the regenerated tissue still needs to be addressed. Still, there is promise that this might cure diabetics if they can solve this problem; and also, that if such a treatment were given to a type 1 diabetic immediately following diagnosis, they might be able to halt the destruction of islet cells so that a person never truly develops diabetes.

Some researchers are also working on true "vaccines": medications that could be administered to young people at moderate to high risk of developing type 1 diabetes (like Frances) that would prevent the autoimmune reaction that destroys the islet cells.

Developing drugs to halt the autoimmune process:

There are drug trials underway that can stop the destruction of the islet cells in the pancreas by suppressing the autoimmune process without suppressing the entire immune system. This has most promise as a "vaccine," a treatment for newly diagnosed patients who still have some pancreas function, which can then be preserved with this kind of treatment.

Developing an artificial pancreas:

Manufacturers are trying to develop an insulin pump that can simultaneously test blood sugar and administer the correct dose of insulin on an ongoing basis to mimic a real pancreas. This wouldn't be my own preferred solution, but if it works, it would be a cure. The advantage is that there would be no question of immunosuppression.

There's this one, too:

Genes

This has been an extremely difficult post to write. I've found that I can't cope with the day-to-day burdens of diabetes care if I am constantly waiting for a cure. In order to move on and live as normal a life as possible, I need to act as if I will have this for the rest of my life. This, strangely enough, helps me think of it as 'normal' and an accepted, routine part of my day.

But if I do that too successfully, then I won't have a chance to help find what may eventually end type 1 diabetes.

It is so, so hard looking at cures. It is so hard not to get my hopes up--human trials!--but if I do and nothing comes of it, the crash later will be worse. But just for today, I'll allow myself to think about it. Just for today, I'll look at those potential cures and imagine what my life would be like.

Just for today, I'll think about that day when I might finally get the call: "Andrea, it's your turn. Come in for a cure."