Result 77

So, I checked my blood sugar the other day with one of M's old meters (not the one connected to her insulin pump).

I had never done it before.

Here is what I learned:

1) Those lancets sting like nobody's business, and the holes they make in your finger sting for a while after you think they should be over it by now. I've had bad paper cuts that have stopped hurting before these pricked holes did.

2) Squeezing out enough blood to satisfy your thirsty test strip takes talent. I had to make four, FOUR different holes in my finger and throw away two test strips before I could finally get a reading.

3) Even though the holes won't bleed enough to give you enough blood before the test strip times out, it won't stop bleeding for a couple of minutes. M simply licks her finger and wipes it on her jeans after a stabbing. I don't know what she does if it keeps bleeding, but I found myself sucking on my finger for a few minutes to both alleviate the sting and avoid having to put on a Band Aid.

4) The sides of your fingers are your preferred target for a lancing, because it won't interfere with the use of your finger pads. After all, we type, dial, text, and play instruments with those fingers. If they sting, it will make life a little less convenient. But the problem is that the pad is the easiest place from which to procure blood.

5) If your lancing hole isn't deep enough, no amount of squeezing and rolling your skin around will force out the appropriate amount of blood in time.

6) Get your big drop of blood out and sitting on your finger before inserting the test strip. Then there is not stress about timing.

7) I have a deeper respect for my daughter, who has clearly mastered this skill and endures the discomfort 5-7 times per day in order to better maintain her health. She almost never gets error messages on her meter! When she has trouble squeezing out blood, I will endeavor to be more patient, even if we are waiting for critical information from her meter.

I feel like a complete wimp.

Even so, like any parent of a child with diabetes, I would trade places with her if I could.

You look deceivingly small, but you don't fool me any more!

Brittle

I learned a new diabetic term recently.

I am always sorry to hear that there are more diabetic terms that I have not heard before. To me, that means that there are things I don't know, might never know, or might not ever want to know about diabetes.

The term I learned is "brittle diabetic".

A brittle diabetic is one whose blood sugars are especially difficult to control.

I have often wondered about this.

It seems that, so far, M's blood sugars are usually somewhat predictable. Not always, but usually if we have a really high or really low number there is some rhyme or reason to it. And it's usually something that we can figure out, as long as M is cooperative and truthful during the figuring process.

But I had noticed that some of my students seemed to have a greater number of highs than she. That the highs seemed far more unpredictable than hers.

Of course, being a smug diabetic mom, I at first thought that perhaps my students were just not as good at managing their diabetes as my little angel.

But it does seem to me that some people just have better luck than others.

Then I read about Miranda. Miranda was a young woman who died from complications from Type 1 diabetes.

My mother made the acquaintance of Miranda's mother through work. Of course they went through that weirdly comforting "You too?" of diabetes connectedness, and then Miranda's mom shared a book that she had written about her daughter's painful journey through diabetes. In it, the book discusses the fact that Miranda was a "brittle diabetic."

Oddly, the book says that Miranda found the diagnosis liberating: she realized that her crazy bg levels were not her fault.

In life, I have often told myself that it could be worse. That someone out there has it worse than I do. It is both horrifying and comforting. It also helps me to pull myself up, realizing that there are people out there with way bigger problems who not only survive, but find joy in every day.

I know that I am not the only one who functions in this way.

Once I went swimming at the house of a friend of a friend. She and I had both, long ago, suffered second-trimester miscarriages (also known as still births). With years between our shared experience and the day of our discussion, we talked about how we felt at the time.

I said that I always felt lucky, because I had not had a child before the miscarriage, and I really didn't know what a true loss it was: something I would have surely known if I had experienced childbirth previously.

My companion looked me right in the eye and said, "Now isn't that weird. I felt lucky that at least I had had a child before, and that the loss would have been greater if I hadn't."

So, while I am saddened, and often exhausted by living with Type 1. While I fear, on some level, for my daughter's life every day, I have to count my blessings yet again.

She's not brittle.

My baby is strong.

Just keep moving. It will get better!

The rule of small numbers

When M was diagnosed, her teacher gave her a very useful gift.

It is a book entitled Dr. Bernestein's Diabetes Solution, which was written by a doctor who is, himself, a diabetic. In the book are many interesting anecdotal stories regarding growing up as a diabetic over the years. Some of the stories involve boiling syringes, using daily urine tests, and general health inconveniences. The man became a doctor in order to learn more about managing diabetes well, and having the authority to teach people to manage their diabetes well. He claims that he has patients whose myopathy, retinopathy, etc, have actually REVERSED after learning to manage their diabetes using his methods.

One item that he brought up in his book is the "rule of small numbers". I am not sure if Dr. Bernstein is the first to call it such, but it seems to make sense, and it taught me a lot.

First of all, did you know that the FDA labels need to meet a certain accuracy level? I am sure you assumed that was the case. I know I did. What I didn't know, is that nutrition labels are permitted to be off by up to 20% and still meet FDA standards.

I really don't have that big a problem with this: food is a messy business. However, for people who rely on accurate nutritional information, labels can be disappointingly inaccurate.

Diabetics who are dependent on insulin use what they call a "carb ratio" to calculate how many units of insulin to give themselves when they eat. M's current carb ratio is 7. That means that for every 7 carbs M eats, she must give herself a unit of insulin. If M gives herself a unit of insulin without eating, it generally brings her bg down about 20 points (mg/dl).

The good doctor, therefore, recommends that diabetics stick to low carb food for accuracy purposes. Since the margin of error in food is 20%, a food whose label claims that it has 10 carbs in it may actually have somewhere between 8 to 12 carbs. The amount of insulin that covers 8 to 12 carbs does not vary that much; in M's case, it's about a half unit of insulin. If she gives herself 20% too much, her bg will be about 5 mg/dl less than the ideal. If doesn't give herself enough, her bg will be about 5 mg/dl higher than ideal. 5 mg/dl off is no big deal at all.

However, if a food claims to have 60 carbs in it, then the actual number of carbs in the food can range from 48 to 72 carbs, which can make a big difference in the amount of insulin you give yourself to cover it. Let's see: If she gives herself 20% too much insulin, her bg will be 40 mg/dl lower than ideal, which brings her into dangerous territory. If she gives herself 20% less than she needs her bg will be 40 mg/dl higher than ideal.

M's target bg - the one we shoot for every day- is 120.

In reality, we are very happy if it's between 85-145. Because she is a teen, and because some foods don't have labels, or portions are over estimated, underestimated, and because of other factors like exercise or lack thereof, most days it goes over 200 at least once. Nearly every day it drops below 70 at one point.

We notice that when M eats steak and salad, and minimizes bread, her bgs are much better under control. During the holidays, when the house is full of carb-loaded sugar-filled nutritionless crap, her bgs need to be monitored much more closely.

While many low-carb foods are delicious, sometimes a kid just wants a bagel, which we then pay for in extra test-strip usage and monitoring, or, alternately, higher bgs.

The argument in the DOC has been that, while "the rule of small numbers" seems to make logical sense, it doesn't always work.

I think it is true, but brittle diabetics and diabetics with other factors such as unrelated illness, medications, etc. might not be able to rely even on something as seemingly straightforward as the rule.

Currently, we use the rule as a guideline in determining a balance in food. For example, M is smart enough to realize that eating a large Blizzard from Dairy Queen  (at a labeled 160-190 carbs, depending on flavor) or a slice of cake is not only not worth it to her, but it can also be dangerous. But she knows that if she wants a big slice of Italian bread, she best eat it with a steak and salad so that her total meal is less than 70 carbs.

Verdict: I like the rule of small numbers, but while M is off at school, with high carb quick lunches and hot lunches, sticking to the rule can be a challenge. Let's hope she makes good food choices when she is out of sight.

Here's a small number. I'm pretty sure I can cover for that.

Eating disorder

There has been some discussion on the interwebs about diabetes and eating disorders.

Now here's something I hadn't thought about, or worried about enough, evidently.

I first came across the topic after Joanne had posted her fabulous video, "What not to say to the parent of a Type 1 diabetic". In the video, she mentions Halle Berry. Saying that if Halle Berry can cure herself, why can't the protagonist's daughter?

The response? "Halle Berry is Catwoman. My daughter is not Catwoman."

This prompted me to research the topic of Halle Berry and diabetes, because I had never heard anything about it before.

Wow! Was I out of the loop!

It seems that Halle Berry had been diagnosed with Type 1 diabetes, and declared on a national talk show that she had "cured" herself, and now has what she likes to call "Type 2" diabetes, because she can control it with diet and exercise.

Well, I've got news for you: Halle Berry didn't cure herself, (There is no cure for diabetes. You can only manage it.) nor did she convert herself into a different type of diabetic (The difference is not in the use of insulin, nor in the age of the patient during diagnosis). As a diabetic, she should know the difference between the two.


I mentioned that when M was diagnosed, she had lost 20 pounds in three weeks. My daughter was starving to death because her body could not process that food entering her body. In fact, she was not only starving to death, but her body was being poisoned by the food she ate.

If not for insulin, my daughter could have looked like this early recipient of insulin:

courtesy of http://www.diabetesindia.com/diabetes/diabetes_insulin5.htm

(same child, before and after experimental insulin treatment in the early 1900's)

and eventually would have died after a few months, maybe a year if she didn't eat much.

Which leads me to this idea about eating disorders.

During my "Halle Berry research phase," I read a blog that suggested that Ms. Berry might be deliberately keeping her bg high, at risk to her own health, in order to stay slender. Knowing what I know about diabetes and weight loss, I could see why someone might jump to that conclusion, but I said "pshaw" to the idea, thinking that a celebrity with a gajillion dollars and some determination might find just the right diet and exercise combination to keep her bg levels in range.

Not "cure" herself. But control her diabetes.

Fast forward to mid-November of this year, when I received a catalog from the ADA.

This time of year they sell things like Christmas cards and ornaments at a high price, a portion of which goes to diabetes research. The catalog is full of items to purchase as well as inspirational or frightening articles about diabetes.

I was surprised to see an article in the catalog  about diabetes and eating disorders. It told the stories of some young women who were risking their long-term health in order to stay slim. They fully acknowledged that they did it. They knew that they shouldn't. But apparently they didn't think that what they were doing qualified as an eating disorder.

So, if this is a bonafide problem in the Diabetic Community, maybe the suspicion about Ms. Berry had some merit.

On the other hand, maybe she was misdiagnosed.

So great.

As the mother of a teenager - a daughter- with diabetes, who clearly doesn't have enough for which to be watching out, I now have to stay alert for signs of an eating disorder in my kid.

The signs and symptoms are the same as for other eating disorders.

As a high school teacher, I am familiar with them all.

I want to end by saying that I am hopeful that my pragmatic daughter will be wise enough not to get caught up in the pursuit of perfection through extreme body management.

But I will indeed keep my eyes open.

Thought I'd end with a healthy-looking image.

Treatment and trials

When M was first diagnosed with Type 1, Bill and I made a decision almost immediately about research, and our daughter's potential role as a guinea pig for finding a cure for diabetes. We would do anything we could to help support the research regarding the causes of diabetes,  but we did not want to engage in any experimental treatments for it. We decided that if she wanted to engage in experimental treatments as an adult, we would support her, but she wouldn't be doing it on our watch.

We dutifully enrolled in a program called TrialNet, which tracks immediate family members, and some secondary members, for a few years, and helps the researcher identify markers that might make one more prone to Type 1. We had our blood tested, let them gather their information, but, as they tested siblings up to 18 years of age, and parents of up to 42 years, we quickly aged out of the program.

But I did receive a nice tote bag.

As far as other information gathering programs, it wasn't until this year that we enrolled in T1D Exchange, which collects data from families as well. Did you know that psoriasis is possibly connected with Type 1? Now you know.

Now, being a D family, we are always on high alert for any information about Type 1 in the mainstream media. You know the media everyone else reads. Not the JDRF website, nor Children with Diabetes message boards, nor JAMA, nor the Joslin Newsletter.

Recently, Bill, M, and I discovered such an article in the Los Angeles Times about a new treatment for diabetes. The summary is as such: A doctor from Massachusetts General Hospital has been working on identifying a vaccine to prevent diabetes. While working with the vaccine, and while testing it on humans, she discovers that the vaccine can actually regenerate the precious beta cells that make the pancreas work; even in people who have had diabetes for a long time.

And Bill and I think: "Wow! Wouldn't it be cool if this pans out?"

And M says, "I want to get in that study!"

Imagine the sound often used in party scenes at the movies. The teen heroine is trying to share something with her boyfriend, but it's too noisy for him to hear, so she ends up yelling, "I think I'm pregnant!" really loudly. With the screech of a record being scratched by a needle as it suddenly stops, it becomes silent, and the whole party looks at the distraught couple.

That record-scratching screech is what I hear in my head.

The thing is, we, as M's family, want to see a cure in her lifetime.

For M, tomorrow wouldn't be soon enough.

I sometimes forget that this is how she feels. I feel my heart sink. I feel a stone in my stomach. Bill and I look at each other, and a silent agreement passes between us.

"We'll talk to your DNE about getting into the study. We want to make sure it's safe."

In the meantime, I check it out. The vaccine sounds safe. It has been used for the prevention of other diseases, and the only side effects reported are a soreness at the injection site. Am I sure I want her to be involved in this study? No, but I want to talk to someone else about it.

When we bring up the study to the DNE, she tries to sound impartial, but she involuntarily makes a face.

She says, "You just want to be very careful when deciding to enter this study. The doctor running this study is very controversial. People are very suspicious. It sounds like a dream come true: it cures diabetes and there are no side effects. But you want to make sure that you research the study thoroughly before deciding you want to be a part of it. You don't want to risk your health unnecessarily."

She then tells us about a "closed loop" study that is coming up in the fall. M agrees that she would like to be a part of this study, and asks the DNE to make note of the fact that she would like to participate.

While this sounds great, I can't help feeling disappointed.

Our DNE is pretty conservative. We have asked her about eliminating insulin injections through diet, and she shut us down, saying she had never heard of such a thing. Unless she hides under a rock, I know that it's not true. If I have heard of it, she, a professional in the field, has certainly heard of it.

I figured that she didn't want to dedicate our precious office time to something that she thought would not be a viable option for M.

I suppose that she also feels similarly about the diabetes vaccine.

So I am back where I started.

I will do some research. I will read some more. I will check into the study. And I will keep praying.

Hmmm. Looks like the jury is still out.