No choice

So a few weeks ago I receive a letter from our insurance company.

It states that my daughter is on a medication that is "no longer a preferred medication".  And I think to myself, "Really. The only medication that she uses is insulin. Did you have an alternative for insulin you HMO bastard pieces of shit?" (We actually have a PPO, but I just love that quote.)

Upon further investigation, it seems that Caremark has decided that it no longer wants to work with Humalog (from the Eli Lily company in Indiana), and prefers to work with Novolog (from Novo Nordisk, a company in Denmark). They stated in their letter that failure to switch to the preferred medication may result in loss of coverage for the current medication.

This makes me nervous.

Why? Because the one student I know for sure uses this stuff has very wild swings in blood sugar during the day. His mother and I spoke about different kinds of insulins at a school event. She was touting Novolog as better because it works faster, more like natural insulin.

I thought that maybe we would try it, eventually. Maybe it would work more effectively with M's lifestyle, but we would wait to do it over the summer, if we did try it, so that we could monitor the effects of the change on her system without too much life getting in the way.

But the insurance company threw off my time line.

I asked another diabetic student about which insulin she used. She said that she uses Humalog, and that she had tried Novolog, but after trying it, her doctor wrote her a letter stating that she needed to switch back for medical reasons.

What were the medical reasons?

She wears her pump very discreetly, snaking the tubing from a pocket in her jeans to the infusion set on her thigh. While using Novolog, she said that she was developing divots on her thighs at the infusion site. Her doctor noticed that her muscles were withering where the Novolog entered her system, and successfully appealed the insurance company mandate.

I was a little alarmed.

I brought my concerns to our DNE, who immediately poo-pooed the idea. She had never heard of any of the problems to which I was referring. She told us that "There is no difference between the insulins, and anyone who tells you otherwise is blowing smoke."

After careful consideration, we chose to give Novolog a try without appealing the decisions of the insurance company. We hope that all will go well, and that we won't have to fight for an appeal in the future.

With lacrosse season starting up, I am hopeful that this new medication will interact with M and her lifestyle smoothly.

But I know better.

No adjustment is simple in D-world.

I will be sharpening my swords for battle, just in case.

Please don't make me use this.

Story Time Success

I may have mentioned once or twice that I teach high school.

I love this job.

Kids keep you on your toes, and normal adults are so boringly well-behaved.

I have a Spanish 1 class late in the day. This week we were learning "la mochila" (the backpack). In preparation for the lesson, I had packed one of M's backpacks with some typical and not so typical items that one might find in a high-schooler's backpack: el lápiz, el bolígrafo, el cuaderno, la carpeta, etc. The kids would guess what was in the backpack in English, and I would look inside to see if the item was in there. If it was, I would remove it, set it on the marker tray (what used to be a chalk tray), and label it.

Included in my backpack was ¨el libro¨ . When a student guessed that there might be a book in my backpack, I reached in and pulled out the book I am currently carrying around: Think like a Pancreas.

One of my students could probably have moved on to Spanish 2, but was a little shaky and ended up taking Spanish 1. He does a lot of doodling in his notebook as a result. At the end of class, he handed me a story that he wrote when he should have been copying the vocabulary into his notebook.

The Pancreas That Wanted To

             Once upon a time there was a little girl. Her name was Victoriabby-Devon-Charlie-the great. But they called her Devon for short. She had diabetes. She was very sick from it, and all of a sudden the pancreas didn't work. So she has to take insulin, because her pancreas couldn't. Devon went to the doctors and the doctor said "your pancreas is being silly" to her. All of a sudden her pancreas woke up, like sleeping beauty. It didn't like being called silly, so it wanted to produce insulin but couldn't. When Devon went to the drs. to get more insulin, but her pancreas only wanted its own type of insulin, so it tried and tried, and some just came out! The insulin from the doctors mixed with the real insulin from the pancreas, and the mixture caused a reaction, and the reaction got rid of diabetes forever. Then, Victoriabby-Devon-Charly-the-great lived happily ever after.

                                                                       THE END

I promise you that this is exactly what he wrote. I had to work very hard not to edit it.

All of my students know that M has diabetes. I try to give the kids a rudimentary understanding of what it means to have diabetes. When I read this unassigned piece of written literature, I thought that it showed some tiny level of success.

Not because this fourteen-year-old could construct flawless sentences, and not because he got all of his facts straight.

I felt success because he knew what a pancreas was. He knew what insulin was. And he understands the dream of a diabetic is for a quick cure.

Now if only M's pancreas would grow tired of being called silly. THEN we might see some results!

Glimmers of Maturity

M went to the Winter Weekend last week.

This program is especially for teens with diabetes. This year about 35 kids with diabetes spent the weekend in Vermont playing games, doing ropes courses, having a dance, and listening to adults with diabetes explain how they manage their disease.

There was a power lifter. There was a triathlete.

M reunited with some of her friends from summer camp, and also met some new ones.

Of course she had a good time. She's M. She loves people and new experiences.

Flash back to camp time: I pick up the flier about the Winter Weekend and ask M if she'd like to go. She shakes her head in distaste. "No, I am just not into that."

I signed her up anyway.

I am thinking that she seems to burn out on having diabetes every few months, and that this might be a chance for her to recharge her diabetic-management batteries.

Needless to say, I am smugly congratulating myself on being right about that one. She thanked me repeatedly on the way home.

At pick up time, there was a parent meeting, in which we heard about the kids' weekend as well as what resources are out there for parents and children with diabetes.

There was one program that caught my eye, but I didn't think that M would go for it. It is a program called STAR: Steps Toward Adult Responsibility. The program matches teens with mentors who are managing chronic illnesses in college. The illness does not have to be diabetes, but includes chron's disease, celiac, and other ailments that do not go away. As I listened to the college student in charge of the program, I thought I might talk to M about about checking it out in the car ride home.

The ride home was fun. M told me some stories, shared what the speakers were saying, and how it affected her. Then she mentioned the STAR program, and told me that she had signed up to be on their e-mail list, and can we start going to their monthly meetings?

I drove on, amazed as my daughter explained that she thinks that she needs support more than every six months, and that she thinks the program will really help her stay on track and keep a positive attitude.

Will wonders never cease?

But, just so you know that M is still M, she is begging us to buy her some girl scout cookies this year.

Because they are yummy.

Dangerous and Unintended Consequences

It all started Friday evening, as I was reading the headlines to my husband, Bill. A little article on the front page of the Concord Monitor caught my eye. "New guidlines to prevent distracted driving".

It seems that our U.S. Transporation Secretary, Ray LaHood, has released new federal guidelines for automakers to help prevent distracted driving. He recommends that manufacturers create a device that will block cell phones from working in the car while the wheels are in motion.

Then Mr. LaHood went on to say that the guidelines might be extended to "all portable electronic devices that might find their way into a car."

I told Bill that to me, a "Live Free or Die" New Hampshirite, this seems ridiculous. After all, I don't text or talk on the cell phone while driving, but sometimes I have my children make a call to our destination while I am driving, and they are safely in one of the passenger seats. "Honey, call Grandma and let her know we should be there after lunch" never seemed to threaten our safety as a family on the move.

And while my kids don't have Gameboys or DVD players,I see no problem with letting kids play games on electronic devices while in a car. I thought about how the government tried to force car manufacturers to make seatbelts that belt people in whether they wanted to be or not (remember those cars with the moving seatbelts that hummed into place when you turned the key?).

I supposed out loud that the manufacturing guidelines might be effective, but that going to extreme of blocking all devices seemed silly.

"Don't you think M should be able to text a friend while I am driving?"

Then Bill said, "I wouldn't worry about the texting. I would worry about her insulin pump."

Oh.....

The insulin pump.

That thing that keeps my daughter alive. The portable thing that electronically delivers life-giving insulin to her body. The device that communicates with her glucometer to determine how much insulin she she administer when she eats.

That thing.

She will be driving soon.

If we have a car in which her insulin pump is disabled, she could kill someone, cause a serious accident, or die. If she is in a friend's car with the proposed technology, she could have a medical emergency for which her friend is unprepared. (Talk about distracted driving!)


This is not alarmist "someone could hack into my pump" bologna. After all, hacking into someone's insulin pump would be the least efficient form of terrorism ever.

But this.

This is a genuine hazard.

The thing is, infusion pumps are not only for people on insulin. Some are used for pain medication, or medicine to assist in healing spinal cord injuries. What if these infusion sets are disabled?

Any car that M entered might disable her pump if these guidelines are implemented. And those who have learned to manage their chronic, life-threatening illnesses, might just have to do without.

It is time to act. I am contacting my congressional representatives.

I would appreciate it if you did the same, before the unintended consequences of these guidelines become a reality.

Like brushing your teeth

I am feeling like a bad mother again. I sometimes feel like I can't do what I need to do to get M to independently follow her diabetes regimen. I mean, I have to get her to do this independently BEFORE she heads off to college in a few years, right? I can't be her helicopter mom for all eternity, can I? It goes against all of my Montessori training.

I am reading a book suggested by Jaqui, Think Like a Pancreas (God, how I miss reading fiction!). The author mentioned that to maintain tight bg control, one must test his bg at least four times per day.

Now I know this, and we ask M to do it, ask her what her bg levels were at breakfast, lunch, after school, etc. We think that she should test her bg at least 5 times per day, and we try to be sure that she does it.

But something about the way it was phrased in the book made me look over at the meter that M had left on the dining room table, and check her last 5 bg test results. I mean, she had already told me that her bg was 196 at breakfast and 209 at lunch. I had just had her check it at dinner, and it was 67, which I saw for myself.

Of course, any reader of this blog is unlikely to be surprised that I discovered that the 67 was the only time that M had checked her bg in the last 24 hours.

I shared my new found knowledge with Bill. He took off his glasses, sighed, and asked which one of us should talk to her about it. It was clear that neither of us did. When confronted with her own lack of discipline in this area, M tends to get ugly. High-pitched whining and angry spitting are common. Less common, but also to be anticipated, are the spinning head and the pea-soup vomit.

Rock smashed scissors and off I went to the lair of the diabetic beast.

Producing the meter, I asked M in a gentle voice why she thinks she should make up bg numbers (The voice really was gentle, I am not being sarcastic).

Her response: "I don't know. It's just easier."

Clearly my darling is a short-term thinker. Instant gratification is the name of the game, and if "I don't think about it now, it might just go away."

Except it doesn't.

I tell her that we try allowing her more independence, and try not bugging her about her diabetes all the time. We try to allow her to step up and take care of herself, but she hasn't once demonstrated the success level that would make us comfortable. I tell her that I really need her to be trained to care for herself properly, so that she will stay healthy when she goes off to college in the future. Then I ask her how we can do that.

Remembering how long it took her to brush her teeth on a regular basis, I asked if we would need to check her meter every night and sit on her for the next two years until it became a habit. I was half joking, but her answer surprised me.

"I don't know. Maybe."

Then she told me that she was really sorry that she was worrying us, and that she means to check her bg, but she just forgets. She really means it. And I know it.

I know that she is not doing this to upset us. I know that she just forgets.

I think that's what worries me the most.

So, for now, we will check her meter at 8:00 pm every night for the next two years. And hopefully testing her bg will go the way of brushing her teeth, and become a real habit.

After this, I will do everything in my power to control by bg levels!

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!

Not that, mom!

M has a problem with her pants (trousers for you Brits).

She likes to wear skinny jeans and pants with funky pockets on the side of the leg.

While this might not be a problem for most teens, neither of these styles is conducive to carrying an insulin pump.

But M tries anyway.

So about three times a week I hear that hissing "Ouch" that many of us use when we break our nails or stub our toes: the "ouch" that lets me know that the pump has fallen from a pocket and is now dangling from her infusion site. If I hear an accompanying "thud" then I know that the infusion set has been ripped out of her skin and is now delivering insulin to my floor.

Her clip broke, so she can't simply clip the pump to her pants. I recommended that she tuck it in her underwear, her bra, anything that might hold it securely into position.

She says it looks stupid and/or is uncomfortable.

So, instead of ordering a new clip like a normal mother, I take a look at tummietoes, which have been mentioned by multiple D-bloggers as great solutions for pump storage when exercising or going out in fancy clothes.

I mention tummietotes to M, and am immediately reminded of an episode of The Simpsons in which the whole family visits an IKEA-like store. In the episode, Marge offers to buy Lisa a new pencil holder called a Pupli (with two dots over the "u"). Lisa looks at her mother and says, "Mom! Not a Pupli! Even I make fun of the Pupli kids!"

M informs me that really only the dorky girls wear the tummietotes at D-camp.

I point out that if she wears it under her clothes, no one will even know that she is wearing it. And it is comfortable and convenient

M indicates that I just don't get it.

I look at the website again. And you know what, they do look dorky. But I don't care. They are available in black and white and other colors suitable for under the clothes. And they are supposed to be comfortable.

I make M look.

She relents.

"All right, Mom. If you want to spend your money on that, I will try it."

Victory!

Now if I can just scrape up the $25.....