How much does an insulin pump cost?

This is one of the great mysteries of life.

It's up there with "How much does a Craftmatic Adjustable Bed cost?" For those of you not of a certain age, the Craftmatic Adjustable Bed would be advertised on television, with "discounts of up to $500" without letting you know what the original price was. Listeners were encouraged to call a phone number on the screen to arrange for a representative to come visit your home to discuss your options, with no obligation to you. Ummm... sounds like predators working over the elderly, doesn't it?

Well, I can't help but feel that way about insulin pumps.

When I check websites for pump information, I am greeted with helpful tidbits like , "trade in your old pump and earn a $300 discount."

Hmmm. If they can offer $300 for an old pump, these things must be pretty pricey, right?

Right.

I asked one of my students, who has been on the pump for years, and recommends it. He told me that WITH insurance, his pump cost about $7,000.

$7,000?!

I have just finished paying off M's braces, to the tune of $7,500. I have a child in college, which is costing me $1,600 per month. We can barley afford to drive to work at this rate!

I figured, this kid, he's really nice, but not necessarily the most on top of it. He must be mistaken. So I keep looking. Yahoo answers gives me a range of zero dollars to $8,000. Diabetes blood sugar solutions tells me that in 2008, it probably cost about $6,500. Everyone points out that in addition to the pump, one must pay for supplies. These supplies cost as much as the supplies for using needles, so all things being equal, your only additional cost is the pump, which costs about the same as a decent motorcycle.

With the economy as a convenient excuse, my husband's company is offering less and less coverage in their insurance packages. Even as we pay for the most thorough coverage they offer, I can only assume that Durable Medical Devices will fall under the category of items no longer covered or 20% covered, still leaving me with about $5,600 to come up with.

Long story short, I will need to talk to the social worker at the hospital to see if having a pump is a viable choice for my daughter, which is what all of these online resources tell me to do, anyway.

I had hoped to have a better idea of what I could be in for; I didn't want to talk to anyone official unless I was pretty sure that I could tell my daughter that she had a choice. At this point, I can't say for sure that she has one.

I loved one comment that was made about the insulin pump: "It cost $8,000, but it is worth it!" I am sure that's true.

If you have $8,000.

Snow Storm

Have you ever been in a supermarket the day before a snowstorm? I mean one that's been predicted and broadcast all over town, of course.  Well, if you have, then you know that the supermarket just before a predicted blizzard is naturally crowded. People want their egg, milk, bread, and Cheetos to be available to them, even if they can't leave the house.

Managing diabetes (or any chronic illness, I imagine) adds a new dimension to these preparations. One must not only be aware of how much butter is in the refrigerator, but also how much insulin.

In fact, it's best to plan out your trips to the pharmacy at least a week before you need any of your supplies, because if it snows, and you only have two days worth of insulin, you might have a problem.

Being that we live in New England, where snowplows are common, well-oiled machines, we almost never are trapped at home for more that one day. When we lived in Maryland, however, a legitimate snow storm would paralyze transportation for days. Sometimes over a week. Walking to the store to pick up eggs would yield nothing, as the shelves would have been cleaned out.

I imagine the same might be true of insulin.

So, this winter, with all of the whacky storms in all of their whacky locations, do your due diligence and plan ahead! Keep that insulin stocked! Keep those test strips nearby! And always always have a back up plan.

Then afterward, you can enjoy the snow!

Reading, learning, sharing

I have been reading up on Type 1 and other forms of diabetes since I became the parent of a diabetic child. Reading various types of advice and information keeps my eyes open to possibilities (and impossibilities) while our family manages this disease.

It has been much like reading those parenting magazines that tell you about how to get your child to sleep through the night, or how to stop them from whining on a long car ride. As I gather opinions and information, I can choose to follow my instincts (like ignoring advice about getting my child to sleep through the night), or take creative ideas and make them own (giving little activities to the kids every 100 miles does make the ride go faster).

When my children were young, I was often chided for allowing my daughter to go without a sweater on days that were below 75 degrees, or for not bothering to put socks on her feet. People did not know that I made these decisions because she would cry and sweat if she was overdressed, or because socks were a moot point because she would only pull them off, chew them, and throw them on the floor to be lost forever. As a result, I have learned not to assume much about the choices other parents were making when I noticed how their children were dressed, buckled or entertained while in the supermarket.

Being the parent of a diabetic has made me notice and recognize a whole new category of children: those with diabetes. I tend to observe the actions of parents of diabetic children as part of my information gathering. As with parents of non-diabetic children, I have likewise learned to keep my mouth shut. After all, I have been the recipient of some pretty weird comments - my favorite being from a coworker that told me that a shot of raw milk every day would cure my daughter's diabetes.

Here is a video that I swiped from one of my favorite diabetes-related blogs, SixUntilMe, by an excellent writer named Kerri Marrone Sparling. She had, in turn, swiped the video from somewhere else (Death of a Pancreas) . Rarely does Kerri write about parenting a diabetic, as she is a diabetic who shares her own personal experiences, so this video was a special gem for me.

I love Kerri's writing. It gives me an opportunity to peek into M's future. I don't like everything I see, but it gives me hope that M can overcome this "unfortunate obstacle", and enjoy her life as Kerri seems to.

I shared this video with M's classmates of sixth through eighth graders, her principal, and her teacher today. As they are all part of M's daily experience as a diabetic, they truly appreciated the misconceptions presented in this video. Roaring laughter from everyone in the room brought people from other parts of the building to see what was going on.

The fact that we were all able to share this experience only brought to light how happy I am that M has such a supportive and well-educated group in her daily life. Hopefully, she will have minimal experiences like the one presented here.

If you know people who have had to face the kinds of questions and statements posed in this video, please share it.

Enjoy.

Good Grades

I am learning more about diabetic culture as I grow accustomed to parenting a child with Type 1 diabetes.

I personally know many kids with Type 1, not because I am part of some fabulous parent network, but because I teach high school. I have read that the typical child has a 1 in 500 ( 0.2%) chance of getting diabetes before he is an adult.

I  personally know 3 out of the 935 students (0.3%) in my high school that have Type 1. I am sure that I don't know every child with diabetes that attends my school. I only know the ones who have been in my class or the clubs that I advise. Even by my limited knowledge, I can tell that the four towns that send children to our school are "above average."

Regardless, just like kids with Type 1 might feel all alone in the world, so can parents of a child with Type 1 - especially if there is no history of Type 1 in the family. No history of Type 1 means that we are the appointed family pioneers of understanding this disease, and that when your aunt says, "Well, surely one little slice of fudge won't do much to her sugars. It's tiny." No one is there who understands what you are talking about when you tell them that "tiny" still needs a bolus  of insulin.

Before M was diagnosed, I knew of two people that had Type 1. They were two kids I knew growing up. I haven't seen them since high school. Now I wonder how they are doing. I wonder how it was back in the day, before all of the options that are available today.

Because of my sense of being somewhat alone in the daily battles with this disease, I will periodically chat with the aforementioned students and their parents about their experiences for comparison.

And then it rears its ugly head: the insecure mother. I mean me. I am sure others partake as well, but they are not obvious about it.

I can't say that I am overt. The parent of a healthy child might ask, "How is Sandra doing in Latin class?" so that she can gauge her own child's success level in Latin. I ask about diabetic numbers. M manages her diabetes well, so like the mother of a good student, I want to gauge exactly how well she is doing.

To my credit, the other parent usually asks me about M's A1Cs before I get around to asking about their child's.

The conversation usually starts with me saying something like, "I heard 'Frank' talking on the phone with someone saying that his bg was over 300. Does that happen a lot?"

Usually the other parent tells me that it is atypical, and that 'Frank' is excellent at managing his diabetes, whereupon I am asked about M's A1C count.

I contentedly boast that her A1Cs have been 6.4 or 6.5 for the last three quarters. Then I hear about the other child, whose numbers are around 7.0. Then I can contentedly sigh, thinking that M's numbers are better than someone's, and therefore she is okay.

Well, maybe a B+...

It's like being reassured that your child will likely be in the top 20% of her graduating class, and will likely get into a good college, except that this "good college" is a healthy adulthood.

This interaction is not nearly as gratifying with people who are unfamiliar with diabetes. My friends and family often ask me how M is managing her diabetes. These people love her, and they care about our family, but they don't understand the numbers I throw out at them.

I know where they are coming from. When May was in the hospital upon her diagnosis, I was told her bg level was 635 mg/dl. I knew that this number was bad, because of the way it was said to me. I knew that normal bg levels were in the neighborhood of 100, but still, how bad did it get? Was 600 REALLY AWFUL, or just merely "not good"? It took experience with the disease to really find out.

It's kind of like telling people in the US that it's 30 degrees centigrade. In the US, 30 degrees (Fahrenheit) is pretty chilly. People know that 30 in centigrade means something different, so they might ask, "That's hot, right?" It would take experiencing a 30 degree day for them to better understand what it meant.

So yeah, while I expect my daughter to get good grades, I rarely discuss them with other people. Instead I brag about her diabetes management; and in the process, I try to educate my loved ones about what all of these numbers mean. In the meantime, I can always grab parents of diabetic strangers off the street to compare notes, and hopefully to learn M's odds of getting into the good college of healthy adulthood.

One step at a time!