Diabetes Awareness Month: The Lazy Manufacturers Edition

The only part of the ordeal I remember is throwing up blood in a hospital bed, but according to my parents, when I was three they once gave me two infant tylenols to bring down a fever. These shredded my stomach lining and I ended up in the hospital for a couple of days, on the verge of a transfusion.

Aspirin is not the only drug that I am overly sensitive to: the list includes caffeine, cold medications, alcohol (puts me to sleep and gives me a headache), hormonal birth control, and even insulin. The intersection of the last two is particularly troublesome: I need fifty per cent more insulin on the days I take a hormonal pill than on the off-days. Fifty per cent. That's a lot. Worse, my endocrinologist seems to think I'm making the whole thing up; and even worse than that, although over half of diabetics are women, therapies and medications don't take cyclical hormonal variations into account. In other words, the world of diabetes treatments and tools is sexist, and discriminates against the majority of its patients.

You'd think, for instance, that adding a feature to insulin pumps that allows you to save different dosages under different programs would be an easy thing to do, but they don't do it. Yes, you can save different basal rate patterns (the basal rate is the continuous dose) and this is a little helpful; but I see most of the difference in my sensitivity in the boluses, or the meal-time doses, and there is no way to save them. Right now I have the hormonal dose calculated and saved in the pump, and during the off-week (which is 25% of the time) I operate half by memory, and half by guesswork.

You also might think that pump manufacturers might give you a way of analyzing cyclical blood sugar patterns in the computer software they send along with the pump. Not so much. Daily patterns, sure. Weekly patterns, sometimes. Monthly patterns? Why on earth would you want to do that?

Let's ignore that it's widely known how progesterone specifically and to a lesser extent synthetic estrogens affect insulin sensitivity (this information is already included in every book and magazine targeted to diabetic women).

Let's ignore how important it is to achieve good blood sugar control for everyone, and how this affects the possibility of good control for women.

Let's ignore how especially important good control is for women of childbearing age because of the effect that blood sugar control has on pregnancy and the lifetime health of the children they bear, including for several months prior to conception.

Can you tell I'm not impressed?

To sum up: we already know about the problem; we already know how to create solutions; but we can't be bothered because it's too messy and complicated to factor in all that icky female stuff. Tough luck, diabetic ladies.

Besides, it's not like you spend thousands of dollars a year on our products and services or anything.

Posted by Andrea at 8:54 AM | Comments (2)

Controllable

I woke up to a high blood sugar on Saturday morning, bolused and waited an hour until breakfast. After the bolus I changed sites--my pump had reminded me to do so the night before and I'd put it off, but if I was waking up high then it was definitely time.

I tested an hour later. Still high. Another bolus, and I waited another hour, getting hungry. I went for a walk to hurry the insulin along.

Another hour, another test, another high, another bolus. Very hungry. Beginning to swear at my internalized medical team and their continuous peppy insistence that diabetics can live a 'normal' life. That so? I badgered them. Maybe you want to give me your pancreas, then, and you can have my diabetes.

Another hour, another test, another high. It hadn't budged in the last two hours. I might as well have been drinking herbal tea for all the effect my insulin was having. So I did what any reasonable diabetic who hadn't eaten in eighteen hours might do: I frustration bolused.

I gave myself enough insulin in a single dose to put myself into a coma. Almost eleven units. Normally that is enough to bring me down (without food) about 45 mmol. I was at 11 at the time, just after noon. I should have been negative within ninety minutes.

I went down 3 mmol. Gave myself a big bolus by old-fashioned syringe and had a fucking lunch.

Now it seems fine, mostly.

What the hell happened? I don't know.

(I do know that Greg boiled me a couple of eggs when I was losing my mind and unable to think about anything but food. Eggs have no carbohydrates, so they're blood sugar neutral.)

The infusion site was new, the insulin was fine. I'd been exercising normally and hadn't eaten anything unusual. I'm not sick, I'm not hormonal. It was just one of those days when this "controllable" illness cannot be controlled, or even slightly manipulated. They happen.

And if you want to do me a favour, then the next time you read a newspaper article about how diabetics can live a normal life as long as their blood sugar is "well-controlled," you will remember this. You will remember that even a smart, committed diabetic with a good head for numbers and the best that technology and medicine has to offer, sometimes, can do everything right and still see nothing work.

There is, in some quarters, a lot of insistence that if diabetics are "good" and follow the advice of their medical team that they can completely avoid complications. That if a diabetic dies young, or suffers from complications, that they have deserved this by not "controlling" their disease properly. Other people get strokes from sheer dumb luck; diabetics get strokes because they ate too many cookies.

On a normal Saturday, I would take twenty-five units of insulin total. Each unit of insulin would bring me down 3.75 mmol. This Saturday, I took about 17 units of insulin before I ate breakfast and it brought me down only 5.5 mmol total. I cannot even begin to tell you why.

(Brought to you by Diabetes Awareness Month.)

Posted by Andrea at 8:11 AM | Comments (11)

out of the loop

So I'm afraid I don't know anything about this hobbit business. I've seen links to a few of the main players in the hobbit business, but I haven't bothered to read anything about it. I like hobbits. I also like elves. Goblins and orcs, not so much. Never made my mind up about Gollum.

The bloggers in question are, I'm sure, fabulous and wonderful and upstanding people whose blogs I simply don't read, not because they're not good blogs, I'm sure they are terrific blogs, I just don't happen to read them. As a result I drift here and there over the post-BlogHer-osphere and have no idea what anyone is talking about, can't contribute to the conversation in any way, and feel vaguely relieved that I didn't attend BlogHer, because if it can turn friendly, hairy-footed little hobbits into a bone of contention that lasts for a month or more, well. Hobbits saved the world! Yay for hobbits! And if anyone knows of a real hobbit blogging anywhere, please do send me the link. There are so many questions I would like to ask. Like, why do the doors have to be round? And, don't you get tired of being so infernally cute all the time?

Also, the Twilight thingamabob has hit the bookstores, and apparently it's the new Harry Potter or somesuch. I never read Harry Potter, and I haven't read Twilight, and I very much doubt I ever will. All over the blogosphere I see conversations raging about Twilight, just as conversations raged about Harry Potter a year or so ago, or whenever it was they came out; as I said I never read them so I didn't keep track. And I suppose I could start a conversation here about the books I'm reading (about the effects of divorce on kids; what the world would look like without humans; the process of creativity; and a spaceship run by a vampire, a cyborg, a woman who intentionally gave herself multiple personality disorder in order to increase the efficiency of her brain, a soldier and a guy whose brain was rewired in some vaguely not-human manner to address his childhood epilepsy). In this conversation, a pin could be heard to drop, and yes, I realize that you can't hear pins dropping over the internet.

And! I hear there's some recession thingie in the States? I can tell because so many of you are blogging about finding jobs and going back to work because your finances are tight--just in time for me to quit my job and head back to school. (Fourteen working days to go, not counting today.)

It's not that I don't enjoy these conversations. If I didn't, I wouldn't read them, right? It's just that the best contribution I can manage is to sit here sagely nodding my head, and you can't see that because you're not here, you're on the internet. And then I start babbling away about the things I care about right now and I picture all of the people reading--which is actually quite a lot of you, not that you could ever tell from the comments--sitting at your computers, sagely nodding your head because you really don't have anything to say.

All of which is to say that I expect this will be something like that. Because most of you are not diabetic.

So yesterday I went to the endo, and guess what? Turns out I'll be getting my insulin pump supplies for free starting sometime in the fall, whenever the forms and procedures are set up. Huzzah!

(This is where you can say "huzzah" too, if you'd like.)

Posted by Andrea at 9:05 AM | Comments (28)

positive psychology for the chronically ill

(Update: I've been told to expect a few folks from DLife to come through. Hello! In case you're looking for some background on the subject I touched on below--aka how it is that "universal health care" doesn't cover type 1 diabetes treatment--you can read my post about the big gaping hole in the Canada Health Act or look at the Pins and Needles archive. Thanks for coming by.)

(Sorry about yesterday afternoon's posting goof-up. "Anti-" wasn't supposed to be published yet; I see it's shown up in feedreaders anyway. Sorry about that. It'll appear again--finished--probably in a few weeks.)

Marvin II is working just fine; Greg insists that it is the same Marvin, he's just had his consciousness downloaded into a new body. As a cyborg and BattleStar Galactica fan I like this idea. But I'm still going to call him Marvin II.

Every time I pull Marvin II out of my pocket for a test or a shot I wonder if the government of Ontario is finally going to realize that we live in a country with universal health care that is legally required to provide medically necessary treatments and services. Without insulin I die. It's hard to get more medically necessary than that--and yet, in Ontario to this point, if you are type 1 diabetic you are shit out of luck, so find a job with good health insurance and don't let go or you're screwed. (Until you get to 65 and then they help out a bit--but let's face it, a lot of type 1 diabetics, especially those without health insurance, don't make it much past 65 so it's not a whole lot of help.)

"Type 1 diabetes, previously known as insulin-dependent diabetes, typically occurs in childhood or adolescence and requires multiple daily injections of insulin for survival. The most common form of Type 1 diabetes is caused by auto-immune destruction of beta-cells, resulting in an inability of the pancreas to produce insulin. Type 1 diabetes may account for 5% to 10% of all diagnosed cases of diabetes(51).

"According to US data, the reduction in life expectancy seen in people with Type 1 diabetes is dependent on the age at diagnosis. At a minimum, life expectancy is shortened by 15 years. One study using life insurance records showed a reduction in life expectancy of 27 years in those diagnosed before age 15. A study of patients at the Joslin Clinic, a US clinic specializing in diabetes, found only a 16 to 17 year reduction in life expectancy for those diagnosed at ages 10 or 15. However, people who are treated at the Joslin Clinic would tend to be from wealthier families and would likely receive better medical care." From Diabetes in Canada Do you have any idea how much time I spend trying not to think about this?

Most type 1 diabetics I know have a passive-aggressive relationship with hope. You never look at it directly; it sits there in your peripheral vision, the potential for a cure. The first few years you were more careless. Doctors probably flamed this by telling you that a cure was imminent, that surely you wouldn't have to live with this forever, so when an article in the paper or a news bit on tv talked about new research that finally promises a cure for diabetes, you tuned in. You read up. You hoped. And then in a few days it fades away and you never hear about it again and once more it was just a preliminary study where the possible payoffs in terms of treatments for actual humans are a decade away at least if they ever get that far--if they don't run smack into the autoimmune response that gave you the disease in the first place--and it's like being diagnosed all over again. You're going to have to live with this thing for the rest of your life. You're going to spend a part of every day measuring and testing and counting and poking and bleeding and paying and thinking and worrying and wondering (and dissociating and avoiding and distracting and pretending). Eventually you learn that it hurts less to accept it and not to hope for a cure. From then on, when a newspaper article blares "CURE FOR TYPE 1 DIABETES, RESEARCH STUDY SAYS" or a talking head on TV is discussing how some white lab mice developed the ability to produce their own insulin, you turn the page or flip the channel. Don't hope.

Sometimes you forget how much you hate it, how big a part of your life it is--until you allow yourself to believe that a cure might come in your lifetime and imagine yourself living without it. When the daydream ends, it hurts.

I donate money to type 1 diabetes research projects but I scrupulously refuse to track or research or follow up on them in any way. I'll contribute, just don't remind me how far away from the end we really are, thank you very much. And don't ask me to think about what might happen if it works.

Apparently, this extends to the financials.

Let me break this down for any new readers in the audience:

Type 1 diabetes is an expensive disease. The basics are pricey enough: $75 for a vial of insulin that lasts me for about three months and would last a typical diabetic for several weeks (I am very sensitive to insulin, which is complicated in other ways but does at least mitigate the cost somewhat). $1 for each blood sugar test strip; you're supposed to use at least 4 each day, ideally eight, and sometimes more if you're sick or you're running high or low or doing basal tests; so assuming on average eight in a day, over a month that's $240 on its own. Now we add in the pump: $6000 for the unit itself. The cartridge that holds the insulin costs $10 and I need to change it about twice a month (again with the highly-sensitive bit: an average diabetic would need to change it more often). The infusion sites, where the insulin is injected under the skin, are at least $15 each and I go through about five each month. I should use more, but I frequently stretch them out to six days (it should be three) because they're so flipping expensive.

All together, that's approximately $350/month. To live. In a country with universal health care.

After my workplace insurance reimburses me, I'm still out about $70. If I didn't have to pay for pump supplies...

...I wouldn't squeeze an extra day or two out of sites that had begun to go bad because I was running out of new ones and didn't want to put another $400 on the credit card.

...I wouldn't have to choose jobs based on whether their health insurance policies cover insulin pumps and supplies, which I have done in the past.

...I wouldn't have to juggle when I order the supplies with when my credit card bill will be due and how long it takes to get paid back by the insurance company.

...I would still have to shell out $265/month for insulin and test strips, which is obscene (see: universal health care, above).

It's not a cure, but it sure would be a help and a significant change in my current lifestyle and priorities.

I have been telling myself for a week not to hope. It won't cover me. I am not poor enough, not sick enough, not young enough, not old enough, to have my medical necessities covered by the government in Canada. It sure would be nice to spend that money "stimulating the economy" as the pundits say, but the conditioned response is too strong. (Don't hope.)

Even if I didn't get coverage for my supplies now, wouldn't it be nice if I at least qualified for a new pump when the warranty is up for this one....

The article doesn't say anything about a means test. They don't say much of anything, actually, but maybe you don't have to be broke to qualify.

(Don't hope.)

I should call and find out before my appointment.

(God damn you. Don't hope.)

It's too late. If I find out I'm not going to qualify, I will be crushed.

Posted by Andrea at 8:24 AM | Comments (6)

Marvin II, plus "Universal" Health Care

(This is what I was thinking about last Tuesday before Drama Ensued.)

A while ago Marvin the insulin pump fell out of my pocket while I was changing and hit the floor on what must have been a bad angle, because the face plate cracked. Every day the crack grew a little more. It still worked, mind you, but obviously it wasn't waterproof anymore and at some point it was going to split straight in half, so on Tuesday morning I finally got around to phoning Deltec for help.

"My pump has a rather large crack across the faceplate...." I began.

"What's the serial number?" she asked. "The model number? What colour is it?" I answered. "Can someone be at home for the delivery?"

"Delivery--of what?" I asked. "A new pump? That depends on when."

"The delivery company is right in your area, so it'll probably be quick," she said.

"If I can arrange a time I can make sure I'll be there."

"Great. I'll call them right away and they'll probably contact you shortly."

Shortly turned out to mean about fifteen minutes.

"Can you be at home for a delivery?" they asked.

"What, this afternoon?" I had a meeting scheduled. "I could be there at 4:30. Is that ok?"

"We're here for your convenience," he said. "4:30 is fine." I popped by to let the acting manager know I would be leaving early and why, and wasted a few minutes on the Star's website before the meeting was to begin when I saw it: "Ontario to supply type 1 diabetics with insulin pumps."

"One of the plan’s key components will ensure that more than 1,300 adults with type 1 diabetes will have access to free insulin pumps and supplies."

I really never thought they'd do it. They'll give pumps to kids under 18 and help pay for strips and syringes for adults over 65, but if you're anywhere in the middle, who cares, right?

(Don't believe it, a little voice whispers inside. You'll only be disappointed again.)

Wouldn't it be wonderful if it were true--even after insurance pays 80% of my health costs, my prescriptions still cost over $100/month. This wouldn't cover everything. I'd still be on the hook for insulin and strips. But oh my god, if that $200/month for pump supplies disappeared--.

(Don't believe it. Only 1300 adults will get pumps. There are 90,000 type 1 diabetics in Ontario, and even if you consider that children in Ontario already have access to free pumps, that still leaves about 60,000 type 1 diabetic adults. And only 1300 of them will qualify.)

Imagine not having to pick a job based on its health insurance. Oh, god, what a load off my mind that would be while I'm going to school. Not to have to worry about how I'm going to pay for pump supplies. I mean York has a health insurance policy for students but it's not anything like enough to cover pump supplies. Freelancing might even be doable.

(Don't believe it. You might not be poor enough. You might be too healthy. You don't know. There's no information here about how they'll figure out which 2% of type 1 diabetics in Ontario will get insulin pumps.)

Wait a minute, where's the Ontario Ministry of Health press release? There must be something on their website....

It starts in September 2008. Wow, what great timing that would be, right in time for school.

(Don't believe it!)

1,300 per year. That's not as bad, then. They're phasing it in. And I'm not asking for a pump, I have a pump. I just want to know if they will fund the supplies. I have to meet eligibility criteria. What are those? I have to prove I can't manage my sugars with injections? How am I supposed to do that? I haven't been on injections for almost six years.

(Don't get sucked in. You won't get this. Don't hope.)

All of the information on here right now is still about the old program for kids, anyway. I haven't got a clue what this is going to look like for adults. I have an appointment on August 7th with the endo--maybe he'll know by then?

(I can't believe you're falling for this. You know what's going to happen. It won't cover you for one reason or another, and then you'll be crushed, you'll feel like you've lost money that you never really had.)

#

At 4:15, Marvin II showed up. He's just as blue as his big brother, and awfully cute. If only he weren't so high-maintenance.

Posted by Andrea at 8:32 AM | Comments (7)

Sick and the Single Mom

I wish I could show you a picture of my stomach right now, Dear Readers, and allow it to linger in your consciousnesses for only the duration of this post, never to trouble you again. When I switched to the new pump a few months ago, I stocked up on a few boxes of the kind of insertion sites that with the old pump could only be used in my stomach. Accordingly, that's where they have all been going. My stomach is now a mess of red marks and scars, some of which bled in impressive fountains or left noticeable holes on the way out. Not good. Not good, and possibly connected to a few weeks of high blood sugars that wouldn't respond to insulin the way I am used to: my stomach is getting 'worn out.'

I ordered new insertion sites of the kind I used to use in my hips with the old pump, and put the first one in last night, intending to give my stomach some time off. This event coincided with the onset of a particularly nasty cold; I feel as if I have swallowed a bucketfull of coarse sand and gravel, my throat is so raw, and my head feels as if it is fifteen pounds. Which it actually might be, consideirng the amount of goo I'm removing from it on a regular basis. It also coincided with the return of Frances to my loving maternal care. The ideal conditions for a perfect storm of sleeplessness.

1. Take daytime cold drugs at 6 to allow one to take care of one's child.

2. Put her to bed at 7:30

3. Wait out the period until the package allows one to take night-time cold drugs, past 11, and then go to bed.

4. Cough. Sneeze. Kleenex. Repeat.

5. Sleep.

6. Wake to the dulcet tones of an alarming pump. "Blockage detected. No delivery."

7. Reset pump, assuming that you were sleeping funny and the tube was twisted.

8. Repeat steps six and 7 a handful of times, refusing to change the site because this means getting up and turning on lights and you might not be able to fall asleep again.

9. Test blood sugar. High.

10. In an hour, pump alarm reminds you to test again. Higher.

11. In an hour, pump alarm reminds you to test again. Higher still. Correction boluses having no effect.

12. When the pump alarms at 6 am, give up and change insertion site.

13. When the child alarms at 6:30, whimper, and stagger downstairs for a quality morning of hallowe'en DVDs.

14. Take daytime cold drugs, generously supplemented with hot tea, so that one does not fall asleep on the couch.

15. New site also not working. Blood sugar now very high. Contort oneself to insert angled-insertion set manually on hip.

16. Bitch to the world about one's terrible night on one's blog.

I'm not sure what to do if I can't use sites on my hip with my new pump. I can't use my stomach forever--it's not absorbing insulin as well as it used to--and I have more fat on my hips than my arms or legs, so if it won't work there, it won't work on my arms or legs either.

Needless to say, last night's poor sleep is not helping the cold any.

(Are there any other diabetic single moms in the audience? If so, leave me a comment or drop me an email at andrea AT andreamcdowell DOT com. I'm doing a bit of research for a potential article/essay.)

Posted by Andrea at 6:31 AM | Comments (15)

A Diabetes:English Dictionary

I offer, for the satisfaction and enjoyment of at least five of my Dear Readers, a selection of terms useful for diabetics and insulin pumpers that you will never find in the medical literature or any of the books at the bookstore:

Frustration Bolus: The dose of insulin in excess of what ought to be required, given after a string of high blood sugars have refused to come down to normal following normal correction boluses.

Cure Fatigue: The practice of immediately turning the page in the newspaper or changing the television station when yet another news story proclaiming an imminent cure for type 1 diabetes turns up.

Food Swings: The unanticipated swings in blood sugar brought about by a new food or a new variation of an old food, and the resultant effects on one's mood and behaviour.

Sugar Scapegoat: When blood sugars are refusing to comply with one's therapy and remaining persistently high or low, the sugar scapegoat is the lucky person or persons who are fortunate enough to bear the brunt of one's misplaced frustration.

Cramming: Staying up late to record several months' worth of blood sugar numbers the night before one's endo appointment. A dedicated crammer may use different colours of ink to simulate a daily testing and recording practice.

Fatal-ism: The diabetes is going to kill you anyway; why not have that cheesecake?

Change Overload: When a new job with a new schedule, a new medication, a new doctor, a new therapy or piece of technology, and a shitload of stress all hit at the same time, and you are left trying to untangle the effects of each on one's blood sugar, which is suddenly out of control.

Reverse Doctoring: When one is in the position of educating the medical professionals one sees about the realities of diabetes.

The Pity Pedestal: Where one is elevated to whenever someone says, "Wow, I could never give myself/my child shots. You are so brave/strong!"

Sugar Hangover: The headache/migraine, nausea, fatigue, chills or sweats brought on when a persistent low blood sugar is finally resolved.

Recorded Greeting: "I am a type 1 diabetic. Type 1 diabetes is an autoimmune disorder which destroys the insulin-producing cells of the pancreas. I am therefore dependent on external injections of insulin to survive. I need to balance insulin injections, food and exercise to maintain my health. This therapy has been arrived at in conjunction with several medical specialists and x years of trial and error on my part. Please select one of the following options: 1: No, I really can't have that drink. 2: Yes, I really can eat that slice of chocolate cake. 3: No, I really can't skip my workout. 4: It is not the same thing as when your Aunt Bertha died of the effects of uncontrolled type 2 diabetes in 1973, and no, I really don't want to hear about it. 5: I'm sure the article about how to cure oneself of diabetes that you read last week in the health section of the free 'magazine' you picked up at the grocery store was quite fascinating, and I'm sure your naturopath has all kinds of experience and insight, but yes, I'm absolutely positive that if I stop taking insulin, I'll die, even with those fancy-pants supplememnts. Please press 0 at any time to speak to an operator. Thank you, and enjoy your day."

Sucker Snack: When you complete your exercise routine, get a really nasty sugar low, and end up eating three times as many empty calories to treat it as you burned during your workout.

The High Fast: When a persistent blood sugar high that will not respond to correction boluses or frustration boluses is high enough and lasts long enough that one ends up not eating for several hours because one does not want to eat until the numbers are at least starting to come down again--and they won't.

Post-Basal Binge: After fasting for several hours to test one's basal rate on the insulin pump, the resulting binge.

Posted by Andrea at 6:10 AM | Comments (18)

Vent and Ramble

First a vent, then a meandering pointless exploration of my thoughts on a new insulin pump.

Vent:

I love living in a country with socialized health care.

Why, universal health care means that no one ever has to worry about their income level or access to health insurance affecting the health care they receive or the progression of any conditions they may have.

I have health insurance through my work. It pays for 80% of my pumping costs and 80% of the cost of a pump every five years, with a caveat: after the purchase of a pump it will not pay for any other insulin delivery devices (pens, pen needles, syringes, etc.) for five years either.

A quick survey of available pumps reveals that there is no pump on the market with a warranty greater than four years.

Thus Our Heroine is in the unfortunate position of being able to claim neither a new pump nor alternative insulin delivery devices on her current husband's health insurance plan. If it weren't for that change to the health care plan last year which allowed her to sign up and pay for her own plan on the same insurer, she would not have any health insurance coverage for any insulin delivery devices at all until December.

I plan to complain, but fat lot of good it will do. I can't be the only person who has been in this position, and I'll bet before last year there were people who were left high and dry for several months between pumps, and without assistance in paying for syringes or pen needles either.

In fact, I predict that in just over four years, that is exactly the position I will find myself in: with a broken pump out of warranty and no health insurance coverage for a new one or for needles.

Meandering Pointless Exploration:

Having established that I am oh-so-fortunate to be able to spend a few thousand dollars out of pocket for a new insulin pump while paying for private health insurance that technically I'm not supposed to need because I live in a country with universal health care, I needed to select a pump.

The contenders were minimed and cozmo.

Minimed Pros: Small cartridge. Pumps generally function well and I am used to the programming. Can interact with continuous glucose monitor, though even with my private health insurance that I pay for and our fabulous universal health care system, I would never be able to afford it. Cons: Customer service sucks donkey balls (it took them six days to courier me the loaner pump, and two days to call me about buying a new one, never mind all that nonsense with the quicksets--and despite calling twice it took them almost three weeks to send me an information package which somehow didn't include a price, though they have called to ask me if I want them to process an order for a new one. Umm, how about telling me what it is I'm buying first? Just a thought). Infusion sets are proprietary, which means I can't use sets from other companies.

Cozmo pros: Comes with a "cozmonitor" blood sugar monitor that uses the same kinds of test strips I already use (freestyle). The monitor clips on to the pump so I don't need to worry about not having it (currently I have one freestyle meter on the bedstand, one on the kitchen table, and one in my purse, and still manage to find myself without one at awkward moments). Monitor beams numbers into pump through infrared ports (how Star Trek!), which then beams them through infrared ports directly into one's computer, so one never ever has to worry about recording blood sugar numbers or boluses. Also software is supposed to keep basal records, which would have been handy for this particular emergency, as I am now in the process of testing basal rates aka progressively starving myself because the basal rates on the old minimed are now locked into a useless machine. Record keeping is my diabetic downfall. This could really help with the record keeping. Also, they are working on integrating the pump with a continuous monitor--and I'll bet it'll be a freestyle, which I am already familiar with and like. Cons: Larger reservoir. Probably a slightly larger pump. No experience with the pump--what if their infusion sets pull a quickset on me and will only work on a few square inches of my hips? I suppose, though, I can try sets from other companies, since they're not proprietary.

Pro: It's not minimed.

That pro cannot be overstated.

By the way, fellow diabetics, you'd be surprised how often my favourite T1 blogs popped up in the google search results while looking for pump reviews.

So a new cozmo showed up on Friday. It is bright and shiny and I will call it George.

OK, I won't call it George. What should I call it? I think my new pump needs a name.

Posted by Andrea at 6:50 AM | Comments (13)

Self-Help: A Review of Mindset by Carol Dweck

Last Sunday I was sitting at the kitchen table reading a book. You might guess that this is not a rare sight in my house.

It had been two hours since lunch, at which I had consumed an entire Laura Secord easter egg--the big ones--without bolusing properly. I'd guessed the dose, then looked at the grams of carbs on the box, and saw that I'd underdosed myself by two units. If I'd been on the pump that weekend, I would have just bolused another two units immediately, but it's an entirely different proposition when you have to stick yourself again. So I didn't.

And there I sat, two hours later, reading a book called Mindset. The blood sugar meter was on the table by my right hand. I looked at it. Should I test? Or shouldn't I? I knew it would be high. I knew I would fail.

~~~~~

Do you remember that Po Bronson article about how to praise kids properly making the rounds of the parentosphere a few weeks back? Some thought it was great, some thought it sucked, some thought it was a mite unrealistic to tell parents not to tell their kids how great they are. And then there were the some (like me) who didn't write about it at all, or even comment on sites where it was written about. And some of you have no idea what I'm talking about, so I'll provide the key quote from the article to ground the discussion:

"When parents praise their children’s intelligence, they believe they are providing the solution to this problem. According to a survey conducted by Columbia University, 85 percent of American parents think it’s important to tell their kids that they’re smart. ... The constant praise is meant to be an angel on the shoulder, ensuring that children do not sell their talents short.

"But a growing body of research—and a new study from the trenches of the New York public-school system—strongly suggests it might be the other way around. Giving kids the label of 'smart' does not prevent them from underperforming. It might actually be causing it."

I didn't write about it not because I thought it was unimportant, or untrue, or uninteresting. I didn't write about it because I think it's premature to talk about parenting before we talk about the parents.

I was labelled smart. Sure. It started before kindergarten, when (according to my parents) I taught myself how to read when I was three. In kindergarten, I was pressured to learn arithmetic so I could skip grade one (I refused). In grade 4, I was streamed into the "enhanced" class for smart kids, which necessitated a school change. I stayed in them until the end of highschool. And I've written about the detrimental impact of being told how smart you are on social integration (short version: being segregated sucks. Putting a bunch of kids in a room and telling everyone how SMART they are is a recipe for isolation and bullying). But I've never considered how the labelling affects the kids, or the adults we grew up to be. The intention was clearly to make us super-achievers who rule the world, instead of getting terminally bored and dropping out of school at fifteen.

Only it failed. On all counts. For one, we are not super-achievers in adulthood. We're very normal, very boring, mostly solid middle-class professional types. For another, while no one dropped out in highschool, so far as I know, several kids from my class flunked out--not dropped out, flunked out--of university. We're talking kids with IQs in the 140+ range. On the surface a textbook description of exactly the forces Bronson wrote about.

Penguin Unearthed wrote a post on this topic which links to a Stanford Magazine article that digs deeper into this research and its applicability in areas beyond parenting, and mentions her recent book: Mindset.

From the article: "...what makes students focus on different goals in the first place? During a sabbatical at Harvard, she was discussing this with doctoral student Mary Bandura ... and the answer hit them: if some students want to show off their ability, while others want to increase their ability, “ability” means different things to the two groups. ... People with performance goals, she reasoned, think intelligence is fixed from birth. People with learning goals have a growth mind-set about intelligence, believing it can be developed."

I think if I'd been left alone, I would have ended up in the 'learning goals' camp. But I wasn't left alone; for ten years I was thoroughly tampered with in an educational system that made it its express mission to tell me every day how innately intelligent I was. No one ever taught us that we could be smarter if we worked at it: our intelligence was fixed. The point of our extra-special education was to enable us to reach the pinnacle of achievement pre-determined by our fixed level of innate intelligence. Umm...this didn't work.

But I'm a change junkie when it comes to personality. Every year I make an insane list of New Year's Resolutions, and every year I believe that if I work hard enough, I can do it. Every year I fail to work hard enough, but that doesn't stop me from trying, and I think if I didn't try then a lot of what I consider to be important about me today wouldn't exist.

Here's a graphical Dweck's model of the mindsets. I fall in both camps (you all know I can't ever pick one of anything).

Challenges? I LOVE challenges ... except in sports, and then I will avoid them at all costs. Persisting in the face of setbacks is my middle name when it comes to changes to my living situation, but when it comes to my career, it's time to pack it in and go home. Or how about seeing effort as the path to mastery? For writing? Absolutely. For art? Forget it; I have no talent.

"But what if you’re raised with a fixed mind-set about physics—or foreign languages or music? Not to worry: Dweck has shown that you can change the mind-set itself.

"The most dramatic proof comes from a recent study by Dweck and Lisa Sorich Blackwell of low-achieving seventh graders. All students participated in sessions on study skills, the brain and the like; in addition, one group attended a neutral session on memory while the other learned that intelligence, like a muscle, grows stronger through exercise. Training students to adopt a growth mind-set about intelligence had a catalytic effect on motivation and math grades; students in the control group showed no improvement despite all the other interventions."

I was on page 62 of the book (quotes so far are all from the article) when I sat at the table and stared at the glucose meter and thought: a fixed mindset could take years off my life. If I see these tests as something that tells me whether I've been bad or good, succeeded or failed, deserve to live or die, then of course I won't test. The stakes are too high. But if I see it as something that will allow me to improve in the future, I will.

Has anyone ever told me that I'm a bad diabetic?

No. Quite the opposite. I've always been a "good" diabetic, a "well-controlled" diabetic, who passed her tests with flying colours. I've always received a smile and a virtual pat on the hand from the diabetes professionals I've dealt with. Yet somehow I still learned that everything was on the line at every test. This is exactly what Dweck found in her work on intelligence and achievement:

"We praised some of the students for their ability .... We praised others for their effort. ... Both groups were exactly equal to begin with. But right after the praise, they began to differ. As we feared, the ability praise pushed students straight into the fixed mindset. When offered a choice, they rejected a challenging new task that they could learn from. ... In contrast, when students were praised for their effort, ninety percent of them wanted the challenging new task.... Then we gave students some hard new problems, which they didn't do so well on. The ability kids now thought they were not smart after all. ... After the experience with difficulty, the performance of the ability-praised students plummeted, even when we gave them some more of the easier problems. Losing faith in their ability, they were doing worse than when they started. The effort kids showed better and better performance...."

In other words, telling smart kids that they're smart makes them dumber. Telling them that they worked hard makes them smarter. So: telling a person with a chronic illness that they are a "good" sick person will make them a worse one--if you want them to learn good habits and improve, you have to praise their efforts. Which means saying, in essence, "Good for you! You tested!" And not interpreting the results as any sort of reflection on them or their effort--as all diabetics know, sometimes you can throw yourself into it heart and soul and not see good results.

Don't I wish more doctors knew this.

I was afraid, before I'd read it, that it would be one of those socially-blind, everyone-can-do-anything-if-they-put-their-mind-to-it books that ignores the realities of prejudice and bigotry and the very real impediments to achievement that these systems can place in our paths. It wasn't. She acknowledges that stereotyping creates real barriers that cannot be overcome with effort; but then details how people with a growth or learning mindset are not as affected by stereotyping as people with fixed or ability mindsets. And she acknowledges that natural talent is also important--that some people can achieve more with the same level of effort; but the point isn't that everyone can be number one. It's that any one person will do better in any one endeavour with a growth mindset than with a fixed one.

For instance, most of you will have much, much better blood sugar numbers than I do, without effort. That's because you have a pancreas. I don't. That's your 'natural ability'; the point isn't that effort will ever give me the equivalent of a perfectly functioning pancreas. It won't. The point is that if I believe that testing is to learn and improve then I will be healthier and have better sugar numbers than if I believe that testing measures my discipline, motivation, or worth.

I read Po Bronson's article. I read it, and I tried it on. For a few days I tried to praise Frances in process ways, telling her what she did well instead of how brilliant she was; and you know something? It felt like an affectation, because it was an affectation. I couldn't talk to Frances that way because I can't talk to myself that way. I need to learn to talk to myself that way first, or at least at the same time, or that smart kid of mine is going to see right through me and learn the lesson my actions preach while my words tell her something else.

But let's step outside the rarified world of privileged families and consider the work done on this subject elsewhere. In the chapter on education, she describes a number of teachers who were assigned classes full of children labelled bullies, emotionally handicapped, mentally disturbed, learning disabled and even retarded by other educators, and made them brilliant over-achievers in a few months. These were kids from bad neighbourhoods with few financial resources and poor familial support. And I think, too, about the revolution in attitudes towards Down syndrome over the last few decades--how babies who were thought to have no potential and no hope because of their fixed attributes were left in institutions to rot and die, and how now those very same children with those very same attributes are busting expectations right left and centre today because people who care about them are determined not to be limited by a diagnosis.

In the workshop chapter in the back (which admittedly I found a little skimpy--more on that in a minute), there is a section on fixing the mindset of a preschooler who believes that ability is innate. The very first sentences of the solution state:

"You decide that, rather than trying to talk him out of the fixed mindset, you have to live the growth mindset. At the dinner table each evening, you and your partner structure the discussion around the growth mindset, asking each child (and each other): 'What did you learn today?'"

The very first thing--fix you.

Or me. Whatever. You know.

Ninety per cent of the book summarizes research on mindsets in various fields (education, parenting, sports, coaching, business leadership, the arts). Only the last chapter is devoted to figuring out how to change one's own fixed mindsets; and the how-to is a little sparse. In that it doesn't exist. (A variety of scenarios with potential responses are listed and discussed.) But then, it can't. How can you present someone with a ten-step program for overcoming a fixed mindset when it can be present in so many endeavours? You can't.

I tested my blood sugar, by the way. The ideal is 3.7-6.5. It was 12.0.

Posted by Andrea at 6:43 AM | Comments (16)

Book Review: Cheating Destiny by James Hirsch

If you are alive and literate in North America in the 21st century, you know that type 2 or adult-onset diabetes is now an epidemic, and that our modern lifestyles are to blame. What you may not know is that type 1 diabetes, an autoimmune disorder, is also on the rise--the incidence has increased at 3.2% per year for decades.

But I'll bet you've never read any passionate newspaper articles decrying this epidemic or what it will take to defeat it.

When I went to the bookstore yesterday (yes, yesterday) I intended to pick up two new releases: Mindset (more on that next week) and Ally (the only actual sci fi series featuring a wiccan protagonist who's not a flake that I've ever come across). Walking through, I saw Cheating Destiny: living with Diabetes, America's Biggest Epidemic by James Hirsch. I picked it up and read the prologue: this is that book I'd heard of last year, I thought; the one where the author's three-year-old son is diagnosed with type 1 while he writes it. The one where entire online diabetic communities eviscerated him for being so stupid as to reproduce while having diabetes.

I picked it up. I had to. I'm glad I did.

If there is one book to convey both type 1 and type 2 diabetes to a non-diabetic audience, this is the one.

It beautifully captures the emotional and psychological whipsaw of living with this chronic condition--the perpetual collision of anger and gratitude, grief and hope, acceptance and denial, terror and courage. Yes, if you are diabetic, you will find vindication in its pages; but if you are not, you might find understanding. And I hope you do. It is so difficult to convey the simultaneous thankfulness for insulin and blood sugar meters and the resentment for the burdens it places on you, the embrace of the promises for new therapies and treatments and the bitter laughter at the glossy photographs in the magazine ads, yet he's done it.

It also captures the doublespeak of the medical establishment with acute clarity--how type 1 diabetics are expected to adhere to the control goals of the Diabetes Control and Complications Trial (which proved that near-normal blood sugar control would help delay or prevent complications), without being informed that even the group studied in that trial could not achieve the original goal of 6.0 for the A1C, and the revised goal of 7.0 was achieved only by providing each diabetic with a full team of diabetes specialists who would call them at home, support them in every way possible, and bribe them with theatre and sports tickets. (Has anyone ever offered you so much as a sugar-free lollipop for adhering to your diabetic regimen?) How, once the trial ended, the group's control eroded in the absence of those supports and average A1cs rose to 8.0; yet 6.0 is still presented as a reasonable goal to type 1 diabetics operating on their own with few resources and often without sufficient insurance or familial support.

I'm sure many of the diabetics in the audience have already read it; it's the non-diabetics I hope will pick it up. Those of you who don't know how it is to simultaneously feel blessed for having been given decades of life you would otherwise not have had, robbed by the knowledge that you are likely to lose decades off the other end regardless, and frustrated or angry at having to deal with the disease moment-to-moment in the meantime.

I'd lend you my copy; but I intend to forcefeed it to my parents two weeks from now.

Posted by Andrea at 8:16 AM | Comments (9)

I'm alive, and Frances is adorable

I wouldn't want anyone to worry over the weekend, and you probably aren't anyway, but just in case: my doctor kindly provided me with a few cartridges of fast-acting and long-acting insulin and two insulin pens for free, leaving me with only the cost of the pen needles to shill out for, and I have been insulined since about 11:00 yesterday morning. No comas for me! Hurrah!

Of course, it's not working as well as the pump. I woke up today at 11.8 (normal is 4-6) because I was afraid to give myself a correction bolus with the pen last night, not knowing how well the doctor had estimated the basal pen dose. And it's weird to have to be in the mindset of poking myself in the stomach again whenever I want to eat anything. And not being able to dial up portions of units, only whole ones. And just generally feeling like I have no idea what's going on in there, again.

But the strangest is not having anything in my pockets, and no tubing hanging out anywhere. Nothing to struggle with when I stand up and sit down. No sensitive site to pat carefully when it catches on the waistband of my jeans, to make sure it's still attached. If you're not a pumper or using some kind of medical device, this probably doesn't make any sense. But I am so used to being attached to that small, blue, pager-like device (which recently was mistaken for an iPod--a new one for me) that to not have anything attached is ... both strange, and freeing.

The loaner's not going to show up until Monday. I intend to enjoy my pump vacation this weekend and milk it for all its worth. I might even wear something without pockets! Watch out, world.

It's like: Hey, did I leave my arm at home? Woohoo! I hated that arm anyway.

Weird.

Anyway, I'm alive, I'm going to stay alive.

But can I just bitch a little bit more about minimed? Sure I can. It's my blog, it's made for bitching. After getting the loaner form madness straightened out yesterday, I started calling around or filling in online forms to get information packages on different kinds of pumps mailed to me. The only online form that didn't work? Minimed's--it scolded me about not filling in my doctor's first and last name, even though I had, and even though they weren't marked as mandatory fields. And what happened when I called them, you ask? ("No, I didn't ask, Andrea, and shut up about this boring pump stuff already.") The lady took my name and phone number, refused to take my address, and told me that someone would call me back shortly with my information package. This made absolutely no sense, but I gave it a few hours, and sure enough, no phonecall. When I called back later, the man who answered the phone didn't understand it either: "She didn't take your address? She wouldn't let you give her your address? Oh. Well. Why don't you give me your address, and I'll send you an information package." Anyone want to bet on whether or not it shows up?

On to more interesting subjects, and the reason all of you show up on Fridays: Frances.

As we've been spending more time outside, we've been around more dogs. This is the suburbs, there are dogs; many of them bark. I don't want her to grow up afraid of barking dogs, so whenever we hear one, I translate: "What do you think that dog is saying? Is he saying, hello! Hello! Come over and play with me!" "Yeah!" says Frances. And she has taken this message to heart. Now whenever we hear a dog barking, she'll say to me, "Is that dog saying, Hello! Come and play with me! He is, Mummy. I want to go play with him. Can we go to the doggy's backyard?"

And then I have to explain property rights.

She is also thrilled with short sleeves, and for reasons long-term readers will be familiar with:

"Mummy, you're wearing short sleeves just like I'm wearing short sleeves."

"Yes, I am."

"I can see your mole!"

"Umm...yes. Yes, that's true."

"Can I hug it?"

"Ok. Yes. I suppose so."

"Awww, cute little baby mole!"

"Umm...."

"I LOVE my baby mole! I really love it!"

"I see."

"It's so cuuuuute! Aww! Cute little baby mole!"

I sigh.

"What beautiful big eyes it has."

"I'm sorry? It has eyes?"

"Yes. Beautiful big eyes."

And what can I say to that?

Posted by Andrea at 7:30 AM | Comments (15)

Not the post I planned to write today

I slipped my black velvet ballet flats on and stopped to check the reservoir in my insulin pump--a little low. Probably not enough to cover me until I get home from work at 4:30. I should change it now so I don't have to worry, I thought.

(cue ominous soundtrack)

Erik and Frances left and I said goodbye distractedly from the kitchen while attaching a new, full insulin reservoir to the tubing. I put the new site in the blue plunger, took off the backing, pulled the plastic needleguard from the needle, and pulled the plunger back, held by breath and stuck it in my hip. Wow, I thought, it hardly hurt at all today. Good. (HA! says Fate. AhahahaHAhahahaha!)

I put the reservoir in the pump and held ACT to prime. It primed. And primed. And primed. Insulin was pouring out the other end but it didn't stop priming. I took my finger off ACT and checked the reservoir--it had chewed through 40 units of insulin (enough to get me through two days) trying to prime the pump.

I called the help number, and gave them my name, address, phone number, date of birth, and the serial number on the pump. "What's the problem?" they asked.

"It won't prime," I said. "It's chewed through 40 units of insulin trying. The reservoir is in there but it won't stop priming, it won't recognize the reservoir."

"Let me check your warranty information," he said. "Your warranty expired December 16. But I can get someone in the Canadian office to call you about a loaner."

Is it completely unreasonable that this is where I fell apart?

Separations, a few major car repairs, whatever. Broken pump! Stop the presses! The sky is falling!

I knew the warranty expired, but I was hoping to get a few more months out of it. Insulin pumps are expensive, even with 80% coverage it's going to cost a lot of money to replace it--money I was hoping to save, under the circumstances. And I knew this was coming sometime in the next few months. If the pump had held out until December, and if Erik and I had still been together, it would have been covered fully, but that wasn't going to happen.

Someone called from the Canadian office to find out where he could fax me the loaner form ("I don't have a fax number," I said. "I could get you to fax it to my office, but I'm not going to drive around today without an insulin pump until I find out about replacement insulins from my doctor, so that's not going to do me any good"). I was able to persuade him to email it to me instead ("Hmm, I see your point. Let me see if I have this as a word document") and now I'm going to print it out, sign it, scan it, and hunt down the fax program on our computer to send it back. Here's hoping it works. At least I'll know there's a loaner coming to me. Then call the endo and beg for some kind of long-lasting insulin prescription, pick it up, get some syringes, (none of which will be covered, by the way, since my insurance company won't cover syringes etc. within five years of paying for a pump) and ...

...

...buy a new pump.

Blah. The last time I looked at prices they were about $7000. That leaves me about $1400 out of pocket.

Fellow pumpers, I'm using a minimed 500-series right now. I'm not married to minimed, but I do want a pump that uses a regular battery, doesn't break down often, and has a small reservoir (I only use 20 units a day; even the 180 reservoir on the paradigm is too big for me). What are you using? Would you recommend it?

Posted by Andrea at 6:17 AM | Comments (23)

Split Infinitives

(I wasn't sure I was going to post this--it's been in draft form for a while--but a post from an LJ friend about avoiding her husband's cystic fibrosis from time to time made me rethink it.)

Sometimes, I don't test my blood sugar before I eat. I assume it's fine and shoot up for the grams on the box. Sometimes, I do that for three meals in a row. Or three days.

It isn't that I don't care about myself, or my health. It isn't that I'm depressed. It's not that I don't think I'm worth it (though there's that, too). It's that sometimes, being present for this disease, its demands and its potential, is too much to take.

Managing diabetes successfully requires thinking about it; and thinking about it means thinking about why the testing is necessary. It means thinking about the potential complications, even if only from the vantage of preventing them. Thinking about preventing them still entails thinking about exactly what it is that I'm preventing. And sometimes, it's too much. I need to not think about it.

I split that infinitive on purpose. In this case, "not thinking" is a conscious activity, not the mere absence of thought.

Not that it ever introduces itself that way. "Hello, Andrea; it's Not-Thinking again. Mind if I stay for a while?" No. Instead, it masks itself as boredom--oh god, do I have to test again? Fourteen-hundred times per year for fourteen years--how many blood sugar tests is that? Do I have to write it down? Still? Can't I just take a fucking day off? Or a week? Or the holiday season? Or 2007?

It's amazing how successfully resistance can disguise itself as boredom time after time and in an infinite variety of situations, and I am fooled over and over again. I am bored of this story, of this job, of this project, of this disease. Bored stiff. And the boredom flies under the radar. I am, yes, bored of the infinite blood tests, the endless minute calculations, the minor adjustments and major overhauls, the thoughts of blindness and amputation and stroke. It seems unlikely because it is; I'm not actually bored. I'm scared.

So far, I have been lucky. Not-thinking has not yet permanently damaged me in any measurable way. But how to get myself to spend enough time thinking about diabetes to manage to head off the worst of the complications without immobilizing myself is a question I have yet to answer.

Posted by Andrea at 7:19 AM | Comments (6)

Diabetes Awareness Month: No Such Thing as a Free Lunch

Wednesday was a workplace celebration of the sort involving speeches by upper management, goofy skits by the proletariat, and a paid-for lunch with cake.

"Are you coming?" a colleague asked me, smiling brightly.

"Hmm, not right now. I missed a bit of work for the daycare Hallowe'en parade, so I'm going to stay put and catch up."

Later on, coworkers trickled back to their desks to read a few emails before heading out to collect their free lunches. Pizza. Drinks. Chips. Cake.

"Are you coming?" another colleague asked on his way past.

Was I coming?

My blood sugar had been a bit high that morning. It's Hallowe'en Leftover season and I'm already eating plenty of junk I shouldn't. But it would be nice not to have to pay for lunch.

"The cake is really good," he said.

I'd have to guess what was in the pizza, the chips, and the cake. The drinks were probably not diet, so I probably couldn't drink them. I'd have to test all afternoon to see if I got it right. I'd have to politely refuse the non-diet soft drinks with a pained smile--after working here for four years, it's still more often forgotten than remembered.

Or I could eat the frozen lunch in my lunchbag that contained a known 84 grams of carbohydrate for an insulin bolus of 4.2u. I wouldn't have to test to see what was happening to my blood sugar afterwards. I could drink the small can of Diet Coke I brought from home, and the three miniature chocolates with 13 grams of carbs for another unit of insulin. I could avoid the repeated explanations, the "no thanks, I'm diabetic."

"No thanks," I said. "I forgot about the pizza and brought my lunch anyway, so I'll eat that."

"OK," he said. "But you don't know what you're missing."

Yeah. I think I do.

Posted by Andrea at 7:19 AM | Comments (15)

Diabetic Guilt

When I first started receiving emails from something calling itself the Patient-Consumer Parade, I was a bit put-off. I'm not a Patient-Consumer, I thought. I'm a health-care user, a diabetic, someone with a chronic illness maybe, but not a Patient-Consumer. It's so typically America-centric to take a phrase that only makes sense in a country without universal health care and apply it willy-nilly to people from all over the world. And I ignored it.

Besides, what would I say? Diabetes is not one of The Big Five for me; it's a personal priority but not a personal interest. I'm glad there are people out there who are passionate about it, because they're the ones who will drive the push for a cure, but at best I stand on the sidelines and cheer them on. At worst, I wave before skipping off to immerse myself in something else--green parenting, maybe, or climate change, or writing, or feminism, or the politics of motherhood. You might think that given a diagnosis with a serious chronic illness that requires so much daily maintenance, it might take up more of my mental space--but no. Mostly I ignore it.

And it's not even the only one! There's asthma. Poor little asthma, neglected and left in the corner to starve. Half the time I forget to even use my puffers or take the singulair, and then wonder why I can't sleep in August.

I'm fickle. There, I said it. I'm as fickle as a Hollywood romance. I want novelty and change. I like new. I've had diabetes for fourteen years this month--fourteen years! I can barely stay interested in something for fourteen weeks; fourteen days is tough sometimes. Fourteen years? I have nothing else in common with the person I was at 17; my politics, religion, values, priorities, daily lifestyle, concerns, everything else about me has changed. Except the diabetes.

No wonder it bores me.

But when the lovely Kerri of Six Until Me put out a call for entries for a PCP to be held at her place, and when I saw that the topic was to be how health concerns weave themselves into daily life, I thought--aha! This is something I can sink my teeth into. (Waiting times? Treatment options? New technology? Not so much. I should, I know, I should, but I don't.)

~~~~~~

I'm reading a book which I will shred before your very eyes in a few weeks. It will take me that long because it's so bad that if I read more than fifty pages in a day I can't sleep that night for speechless rage. I can't recall the last time I hated a book this much. I won't name it--I'd hate to spoil the surprise--but I will give you a little foretaste:

The author argues in part that people with chronic illnesses are "narcissistic."

I won't get into the rest of his argument in this post, since I have such a treat saved up for you all for later on, but in this regard he argues that the current state of the environment is so bad that every part of modern civilization must be destroyed by any means necessary, including and especially modern medicine, and those of us who object because--hey! If you take away my insulin, I'm going to die!--are narcissists. If we truly valued nature or other people we would understand that our death is a small price to pay for a healthy world.

What bothers me even more than advocating the death of hundreds of millions of people without doing even the most basic research to prove that modern medicine really is too toxic is his assumption that no one with a chronic illness has ever considered this.

Every transaction in my day is conducted internally on an invisible environmental register: I drove my car (ghg emissions, smog, sprawl, oil spills). I bought a magazine (deforestation, toxic inks, effluent from paper processing, landfills and recycling). I bought a bag of potato chips (industrial agriculture, water pollution, spread of pesticides in the environment, fuel wasted in processing and transportation, packaging, destruction of useful nutrients, pollution, waste). And: I used a blood sugar test strip. I opened another sterile package of insulin pump supplies. I replaced the battery in my insulin pump. I finished another bottle of humalog. I waste, I waste, I waste.

I have been acutely, painfully aware from the time of my diagnosis that a lot of waste is involved in treating diabetes, and that the manufacturing and transportation and disposal of the products we need to survive might be environmentally costly. I have asked myself a million times if I have given enough back in the fourteen extra years I've had so far to justify what I've cost. But what have I cost?

Insulin analogs are grown in vats of genetically modified yeast or bacteria which is incinerated when it's reached the end of its useful life. I suppose it might emit the smell of burning bread, but I find I can live with that. The jar it goes in is another matter; it's glass, and glass production is toxic and because it's medicine you know it's not recycled, nor can it be recycled when I'm done. But the actual bottle is smaller than a tube of lipstick and I use about one each month. I find I can live with that, too.

The insulin pump itself is a small electronic gadget in a plastic housing. This I am not thrilled with, since electronics are highly toxic and their wastes are shipped to the third world where they are picked over by children. Still, it's small, it will have been used continuously for five years before I replace it, and it has the advantage of being used for something less frivolous than the laptop I bought last weekend. When I'm done with it, maybe it can be refurbished and given to someone who could not otherwise have one, instead of thrown away. Also, I know that electronics manufacturers are beginning to wake up to this problem and are working hard to make products that can be disassembled and recycled, instead of landfilled or incinerated. Maybe my next pump will be greener. I hope so.

Every four or five days I need to replace my insulin infusion site, which is where the pump is attached to me. There's a little bit of metal in the needle (which goes into the biowaste bucket and is incinerated--a strike against me, but it now takes several years to fill that little yellow pail, whereas when I was on injections it took only a few months). Most of it is plastic. So--oil extraction and refining and transportation and pollution. Lovely. But I only change sites at most seven times in a month, and the total plastic waste produced by this is far less than the average family throws out in plastic bags after the weekly grocery trip (we use bins for shopping).

The battery bothers me. About once a month one triple-A battery needs to be replaced from my insulin pump. But they can be recycled, and twelve triple-A batteries each year is less than we use in the computer mouse and the remote--and again, less frivolous.

Test strips. I should be using four each day at least, and let's assume that I use twelve, just to maximize my impact. They are made of plastics, fabric and small amounts of reactive chemicals. They are also about a fifth the size of the strips I used when I was first diagnosed and bought the One Touch II fourteen years ago. When I lay twelve strips out on the table side by side, they make a sheet of plastic smaller than a credit card. Normally I use one-third that amount, but even if I were to use all twelve, how does that compare to the environmental effects of one diaper, one can of soup, one juice-box? My entirely non-scientific answer is that it must be much less.

The difference between a regular Canadian and a type 1 diabetic Canadian isn't the difference between a firecracker and a nuclear bomb after all (more like the difference between a musket and a rifle). I'm not particularly more toxic or environmentally destructive than everyone else. My environmental efforts do much more than compensate for my diabetic sins; as I supposed, the "you're narcissistic for wanting to stay alive because you'll drag the whole earth into the apocalyptic toilet if you do" is just a modern take on the old neo-Darwinian "You should have died anyway, so it's not hateful of me to ask you to die now (quietly, gracefully and off-stage preferred)."

I'm not just a diabetic. My health care concerns are driven by more than what works best or what's cheapest, and that's true of most of the diabetics I know. We know how much waste is involved with maintaining our health better than anyone--we live with it. I want to know how much pollution is produced by the companies who manufacture my insulin and test strips; I want to know what happens to old meters and pumps when they wear out; I want to know how much fuel is consumed in getting my prescriptions to market; I want to know how much the workers are being paid and if they're being asked to do anything unsafe. And when there are problems, I want them fixed. I want to know that the companies are being responsible, using resources wisely, conserving energy and water, preventing pollution and pursuing sustainability. I was ridiculously happy when I saw Norvo Nordisk's Environmental Management System and report online. I'm not just a diabetic, I'm not a selfish bitch who cares about nothing as long as I can stay alive; I'm part of the world and I care about it.

I'm an environmentalist. Everything I do is tied up into that, including my health care. When I take those little plastic strips out of the bottle and insert them in the meter, when I unpack another insertion set, when I open a new bottle of humalog, I am not just toting up dollars and cents, effectiveness and convenience; I am also asking myself, How much did this cost? Who paid it? The poor, the soil, the air, the water?

How can I pay them back?

Posted by Andrea at 8:35 AM | Comments (9)

I'd say I'm between a rock and a hard place, only that's really not the right metaphor at all

Instead, it's more like I'm on a hard rocky place, and on either side of me are soft, cushiony places that I can't get to.

Today the Ontario Budget came down. I've been haunting the damned news sites all day looking for info on the insulin pump thing, where it has absolutely failed to be mentioned. We're not news; I'm used to that.

But if you click on the above link you can see the whole thing, and the budget text on the insulin pump question reads in full:

"providing $12 million in 2006-07, growing to $30 million in 2008-09, to fund the purchase of insulin pumps and related supplies for young people with Type 1 diabetes."

What does that mean? What the hell is a "young person"? Under 15? Under 25? Under 50?

Your guess is as good as mine. There are no details on the Health Ministry website yet.

Thirteen years of being too type 1 for the Canadian Diabetes Association plus a year of being too old for ODAP--priceless. I guess insulin pumps are a need you outgrow, like training wheels. The precise definition isn't up yet, but I'd bet my house that 31 isn't a "young person" for the Ontario government.

In fact, while there are no details on the government website, it is possible to put a few things together by looking at the Hansard record from ODAP--they estimate it would cost $15 million to provide insulin pumps to every type 1 child in Ontario (which I would define as under 18) who currently has no health insurance coverage for pump supplies. The government has budgeted $12 million for this year and $30 million for 2008/2009, so my guess is that this program will not only be limited to young people in a very lmiited sense (max under 21) but those who have no other coverage.

Don't get me wrong: It's better than a kick in the teeth. Obviously these kids need the coverage and I don't begrudge them the money. But this should be available to all type 1 diabetics in the province, not just a limited subset based on youth and coverage. Unless you are fabulously wealthy, this is a hard disease to afford, period--just because I'm 31 and have good health insurance doesn't mean I don't struggle with the costs of type 1 diabetes!

I'm keeping my eyes on Bill 15, which is still with the Standing Committee on Social Policy.

Posted by Andrea at 6:35 PM | Comments (1) | TrackBack

Envy

See? I told you it would be a diatribe.

And before I get started--what is it with my pharmacy? I called last Tuesday to order pump supplies; they said it would be there within a week. I called Monday to find out where they were. They said I hadn't called Tuesday, I called Thursday, and they'd call me when they came in. Last night I gave up when I hadn't heard from them and ordered directly from minimed online; not ten minutes later they called to tell me my quick-sets were in. So then I had to call minimed back and cancel my order.

Those who have known me since November might remember my kvetching about them previously when they kept telling me they'd "look into" ordering pump supplies and call me when they'd figured it out, and never got back to me. I only gave them this one last chance because when I went in to get my last insulin prescription filled a month ago they said they had the system all set up now, and they're right down the street from my house. Every other pharmacy I've ever used for ordering pump supplies has either kept them in stock or had them ordered within one or two business days, not a week and a half. Do I keep them, or find another pharmacy?

Onwards:

I was recently reading a post by the mother of a diabetic boy, in which she details the exhaustion of her days--the tests, the pump maintenance, the endless appointments--and I thought, I hear you sister.

Then I thought, I wish someone had done that for me.

I wish someone had done that for me.

I was diagnosed at 17 when within three days my vision went from better than 20/20 to can't-read-with-the-book-right-in-front-of-my-nose. I was also tired and hungry and all the rest of it, but recovering from Mono, so I thought nothing of it. They put me in the hospital for 3 days on IV and taught me how to mix insulins and give myself injections--this was back in the brave days of "intensive" 2-shot per day therapy. The Diabetes Control and Complications Trial had just been interrupted to deliver the news that the effects of intensive management of blood sugars were so important and necessary that they couldn't in good conscience wait until the end of the experiment and potentially jeapordize the health of so many diabetics; but still, the idea of "intensive management" was two shots per day, or maybe three, instead of one.

Not once did my parents offer me the slightest bit of assistance or support, except for paying for the prescriptions, which it was my responsibility to order, pay for and pick up. (They reimbursed me.) They have never tested my blood sugar, mixed insulins, filled a syringe or injected anything, including me. I arranged for my own doctor's appointments from endos to opthamologists and attended them by myself, arranging for my own transportation. I did all the research, I booked myself into training classes and attended them by myself. I wrote down my blood sugar numbers and kept track of my A1Cs. I made meals out of diabetic cookbooks and measured out my own portions. Sometimes I did my own grocery shopping; I was always responsible for adding whatever items I needed to the weekly grocery list.

To be fair, there is much of this that I would not have welcomed any interference on, and if they had attempted to do so they would have been rebuffed; I'll prick my own fingers, thank you. But most of this struck me as absolutely normal--"it's your disease, you deal with it"--until I read Sandra's post.

Then I remembered Yankee Transplant telling me about her diabetic niece at college, and how her mother still asks about her results and how often she's testing and how things are going.

Is that how normal parents do it?

I spent most of my childhood and early teen years eating crap--half a box of cookies for lunch, chips for dinner, ice cream for desert. The diabetic diet was a huge shock. Restricting my portions, choosing healthy foods, eating on a schedule--this hit me where it hurt. I adapted fairly quickly to testing my blood sugars and giving injections. I could not, could not do the diet. A week or so into trying I broke down in the kitchen and begged my mother not to buy ice cream or chips or cookies for a few weeks, or at least to hide them if they did, so that I could learn to eat properly.

"No," she said. "You have to learn how to do this on your own."

And that's just how it was.

Now I look at F.E. and I imagine her being diagnosed with a chronic life-threatening illness; I imagine her asking me for help; I cannot imagine saying no.

~~~~~

Three years ago my mother bought me an insulin pump by covering the portion my insurance wouldn't pay, and made F.E. possible.

I don't get it.

~~~~~

Despite how this sounds, I try not to be bitter. No, really. That my brother is my parents' favourite has long been obvious to, well, everyone. While I was schlepping myself to doctor's appointments dressed in a torn winter coat, my parents were chauffering him around until he was 21 (why get a license when your parents drive you everywhere?) and buying him new skateboard equipment every two weeks. They'd deny it if I asked them; I don't think it was conscious. But it was real.

I hated it, and who wouldn't? For a long time, I hated them too. What changed that was F.E. They were, in many respects, lousy parents; but they're fabulous grandparents who love my daughter deeply, and she loves them too. A few times a week she'll say, "I go see Mumms and Grandpa!" about fifty million times in a row. They buy her a present every time, and it's always something she loves. It's a beautiful relationship and one well worth stuffing my own scars under the carpet to witness.

And it's my job to deal with it and get over it, regardless of "who started it." Besides, my brother has not yet been able to settle on a profession or graduate from university. They spoiled him so much he doesn't want to grow up, and until they stop paying his way he really has no reason to. He has a sweet deal.

But what I have is the ability to pick myself up off the floor, dust myself off and keep going. I paid a steep price, but maybe it's worth it. It would have been nice, though, to be able to believe even for a few years that I wasn't in this type 1 diabetes world on my own.

Posted by Andrea at 8:10 AM | Comments (9) | TrackBack

Diabetes Log Day 3

7:30 Stayed home from work, so slept in; blood sugar at 5.6. Not hungry.

7:31 to 8:45pm Nibble on snacks when I think I can eat and take bits of insulin to cover them.

8:46 pm--blood sugar 4.9. Success!

I would like to point out that this is decidedly not what the doctors recommend. I should have tested my sugar eight times yesterday and not fed myself primarily cookies. But I did, and my sugars were ok; primarily because I've been doing this for a long time and I know it works 99% of the time.

Why didn't I test my blood sugars 8 times and eat on schedule, as per doctor's orders?

Because I was sick and exhausted. That's why.

It is endlessly annoying that those times when you would most like to rest are the very ones when you are diabetically most vulnerable and most need to remain vigilant. Thank the gods for the pump; when I was on shots, I wouldn't have had any choice about the testing or eating. The insulin schedule does not go on holidays, and if I hadn't tested and eaten a normal way on a shots sick day, I would only have added low blood sugars to the general crappiness of having a cold.

I hadn't planned on adding this, but I'm going to anyway.

It's surprising to me that my routines and regimens posted so far seem exhausting to you, because I keep comparing them to my life on shots, which is so much more difficult and regimented that this feels (most days) like a minor annoyance and not a major obstacle. It's not normal, and it's not fun, but it doesn't feel exhausting to me, most of the time. As long as it's working. If my blood sugars were high this week, it would be a different story (and hey, it could still happen--tune in tomorrow!).

Shots entries would have been three times as long, much more complicated, and not as successful--my sugars were never this good. MOre like this:

6 am--wake up, test, 7.5 mmol. Crap. Three units of short acting and five units long-acting my syringe (can't do partial units by syringe because the needles aren't marked off that fine). One cup sugar-free cereal and one cup of 1% milk.

9 am--four crackers, four pieces cheddar cheese.

12 noon--test. 5.8. That's better. Three units insulin for sandwich (note: for a period of time I had a pen needle--which is like a big ballpoint pen casing that has a cartridge of insulin in it and a needle on the end. You can change the needle on the end. The advantage of this is that it's very portable, unlike bottles and syringes. The disadvantage of the first one I had was that it only measured out insulin in increments of two units, which for someone as sensitive to insulin as I am, is a disaster. So for a period of several months (before the ones that could measure in single units were introduced) I had to dose in multiples of two and then eat to the dose--very annoying).

3 pm--serving of sugar-free yogurt. Do you have any idea of how hard it is to find sugar-free yogurt? There are only one or two brands on the marketplace. Fat-free is everywhere (and maybe the latest carb thing has changed this) but sugar-free? Good luck.

6 pm--Supper. 6.3. Woah. Where did that come from? Measure out supper serving and dose for insulin based on it. Eat. Wait precisely one hour and then exercise for thirty to forty-five minutes (this is when insulin is at its peak--you can wait more or less but then you'd need to wait precisely *that* amount every time in order to be able to predict how the exercise will affect your sugar readings).

9 pm--Time for bed. 10.3? Crap. Take night-time long-acting dose and add an extra unit to bring the sugar down by morning (but it will be high now for most of the night).

So maybe you can see how, in comparison, I feel like a wimp talking about the pump stuff.

The thing is, the vast majority of type 1s are not on a pump, and they're living on a shot schedule.

They're working full time, travelling, staying home with twin toddlers who get sick at the same time, shopping, cooking, sleeping, going through pregnancy, getting the flu, getting cancer, having their weddings, going to doctor's appointments, going to protests, writing exams--on that schedule.

Posted by Andrea at 8:00 AM | Comments (2)

Diabetes Log Day 2

6:00 blood sugar 3.9--eep. A bit low. 2.5 units insulin to cover a bowl of cereal and milk.

8:00--1.5 units insulin for three small pieces of chocolate. According to the package it's less than eighteen grams of carbs, but long experience has taught me that I always need a bit extra insulin to cover these.

Definitely did not dodge the cold. Ugh.

11:50--first prick didn't work, so try try again. Bled enough the second time. 4.2, that's good. Unfortunate that it's not low, though, since I feel like crap and that would have been a more favoured reason than a cold, which is now seeming even more likely. Oh well. Frozen lasagna for lunch. 44 grams of carbs=2.4 units of insulin (you can imagine how well that would work on shots). Thank god it's lunch-time, I'm starving.

This is one of the strangenesses of diabetes--it's healthier to eat pre-packaged foods, or it feels like it, because the carb count is known. Unless one has a kitchen scale on one's desk at work and a chart of carb:weight ratios to accompany it, it is impossible to know how many grams of carbs are in an apple or banana or bowl of homemade soup. Boxed meals, it's right on the package, and it's usually accurate.

So for most people, you're better off having the fresh food; for diabetics, it feels like the fresh food is too risky, and you're better off having mass processed foods and taking a multivitamin.

Spend my lunch hour at the pharmacy trying to see if they will order insulin pump supplies for me.

The first answer: "Insulin pup?" No, that's not a typo.

Second answer: "Let me ask."

Third answer: "No."

That makes two pharmacies in the last 24 hours to flatly reject my request that they order insulin pump supplies for me. But I pick up a new blood sugar meter anyway--$40, less than half the size of my current one, results in less than half the time, not as loud, and uses the same test strips. Yay!

There is a pharmacy within two minutes of my house where I have tried to get them to order supplies, and they keep saying they will and then not doing it, leaving me in the lurch at the 11th hour, so that I have to order them from the company online and arrange to stay home when the delivery arrives. Total PITA.

So I spend an hour this afternoon communicating with the pump company and they are kind enough to send me a list of pharmacies that do order in supplies. Success! There is one 10 minutes from my house!

Sure, it's way farther than the one just down the street, but if they'll order in supplies for me I'll walk there uphill both ways in a blizzard.

2:00--coffee crisp. 1.6 units of insulin.

2:45--I HAVE FOUND A PHARMACY TO ORDER INSULIN PUMP SUPPLIES! So relieved. And it only took me, what, seven months.

4:30--home. Blood sugar is 7.8 on the new meter. Crap. 0.5 units of insulin to bring it down before supper.

5:45--a dinner with about 75 grams carbs. Take 3.8 units insulin to cover it, eat most of it then can't look at the last fifth. Throw it away and have a cookie to cover the difference, or I'll go low. Two more cookies, 1 unit of insulin (smaller cookies than yesterdays).

8:30--bedtime blood sugar is 4.7.

Posted by Andrea at 7:33 AM | Comments (4)

Diabetes Log Day 1

12:30 am--Woke up with a big low--shaky, sweaty and disoriented. Staggered down to kitchen to eat six rolls of rocket candies and two double-stuffed oreos.

6:00--Frances wakes up.
6:40--We go downstairs and I test my sugar. 5.8 mmol (normal). I guess I actually needed all six rolls of rocket candies and two double-stuffed Oreos. Eek. 2 units of insulin from the pump; a slice of banana break and a cup of tea for breakfast. This is a guess, as I don't actually know how much carb is in the banana bread, but I can't find the kitchen scale and I'm hungry.

3:05: Crap. My parents came over with a plate of Christmas cookies for Frances to watch the parade. Of course Frances can't eat an entire plate of cookies--though she'll try--so I have a few, and estimate one unit of insulin each.

5:15 Supper, and too close to the snack to be able to reliably test my blood sugar. Well, that's not entirely true: I could test and then do the complicated math (half of the shot dissipates in one hour, then a quarter in the second hour, so figure out how long it's been and how much your shot was to determine how much insulin is left in your system and how much that will bring your sugar down--tired yet?--and moreso, it never worked for me anyway). And I'm already so tired from the long night, Erik being sick all day yesterday so I was on single-parent duty, and then a weekend's worth of chores and errands crammed into one day--so I don't do the math, and I guess for supper. One bowl of pasta with sauce and parmesan cheese, 4 units. ONe more unit for a cookie for desert.

Does this blow my perfect diabetic cover, or what?

6:30--sugar going a bit low. Have a small slice of banana bread to bring it up.

Also--sneezing again. Please god, not another cold. Not only is it exhausting in its own right, making it difficult to do all the diabetes work necessary (testing and counting and waiting, oh my!) but it makes my sugars so unpredictable.

10:10--blood sugar 4.9. I guessed right. Time for bed.

Posted by Andrea at 7:55 AM | Comments (4)

The Real Conclusion

Just a reminder that you need to tell me by this afternoon if you want to participate in the Diabetes Awareness Month Contest. So far, there are no takers. And please don't feel badly about that, since as I said in the post it isn't something I would do if I had a choice.

But just so you know, I will be participating in the contest, although not as a contestant--I'm going to be jabbing and pricking myself anyway, so I may as well blog about it, right? November 20 to 27: stay tuned for the exciting daily play-by-play of living as a type 1 diabetic on a pump.

And since you've had a break....

(I can hear the screams already: "Nooooo! No more diabetes posts! Make it stop!")

As I said, it's been thirteen years. Thirteen looooong years.

For the first two to five years, I expected a cure would be announced any day. I lived as vigilantly as I could so I could be in the most normal health possible, for when the cure was discovered.

When those five years elapsed, it was like being diagnosed all over again. There might not ever be a cure. I might really have this for the rest of my life. My life might really be decades shorter even if I try my hardest every day to live the way I'm supposed to. I might always be lugging around a purse full of blood testers, strips, sugar candies, insulin and syringes. I might lose my sight; I might lose my feet; I might lose my kidneys. That's when things didn't go so well.

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."

Posted by Andrea at 3:25 PM | Comments (15)

The First Conclusion of Many

After this one, you get the promised break. And there's a Frances Fix at the end. But I'm going to ask you to read through the whole thing, especially if you live in Ontario, because the next month is a crucial time in our province for people with Type 1 Diabetes. Which is not to say the information won't be useful to people living elsewhere; it will, and I'll include that where I can.

Also, this will make no sense unless you read yesterday's "Talk Turkey" post. Just a warning.

~~Recap~~

For type 1 diabetics with the motivation and ability to use an insulin pump, pumps can increase blood sugar control greatly, and it is anticipated that type 1 diabetics with insulin pumps who use them properly will have a greater quality of life--fewer complications of less severity, longer life expectancy, and (most importantly from many people's point of view) getting off the schedule.

But they're expensive; supplies for running insulin pumps cost me approximately three times what the syringe routine did. Even with a generous health plan, I spend around $100/month. Many people don't have health plans; many health plans don't cover insulin pumps, or if they do, cover only a small portion of the costs.

~~An Aside for Non-Canadians~~

The Canada Health Act, the legislation that creates our socialized health care system, covers only "medically necessary" services and equipment. Each province is given the scope to determine for itself what is considered medically necessary, and what is not. A province can determine this narrowly (what will save your life after a car crash) or broadly (what will assist a person in living a longer and healthier life) and there is quite a difference in what provinces will and won't cover. The minimum coverage specified by the legislation is "necessary hospital and physician services."