Diabetes Blog Week

As I continue this journey with my unwelcome guest, diabetes, I learn new stuff all the time.

November is diabetes awareness month.

The American Diabetes Association and the Juvenile Diabetes Research Foundation are both good organizations with differing philosophies.

Some DNEs don't like it when you read or ask questions.

And this week is Diabetes Blog Week. This is the time of year when we are supposed to look around, find blogs that we like and share them.

So here we go.

My favorite diabetes blog is the first one I found. I was desperately looking for coping strategies, when I found Six Until Me by Kerri Sparling. At the time she was pregnant and discussing the trials and tribulations of her diabetic pregnancy, which at times made me weep. She has a nice, light style, and she evidently blogs for a living.

The next blog that I bookmarked was Typical Type 1 by Jacquie Paul Wojcik. She reminds me of what a grown-up M might be like. She drinks beer. She leaves her nasty test strips lying around. She is witty and insightful about the reactions of others to Type 1.

The only other diabetes blog I have on my bookmark sheet is Death of a Pancreas by Joanne, a Canadian immigrant who now lives in Texas. Her daughter is much younger than M, and even though we have never had a direct conversation, she and I do check out each other's blogs. She to look a little into the future, and I to remember that I am not the only insane diabetes momma out there. I discovered Joanne's blog when Kerri posted the video "What NOT to say to the parent of a Type 1 diabetic", which is hilarious if you run in diabetic circles.

I tried to get M to blog about her experiences. I thought other kids might benefit from her discoveries as a diabetic. She gave it a shot. I think she posted about 6 or seven one paragraph posts. But I realized that I wanted her to do it more than she wanted to do it.

Then I realized that I wanted to do it.

So here we are, nearly two years and 98 posts later, still babbling about the diabetic experience from a parental point of view.

I am always giddily pleased when I run into someone and they say that they have read my blog. So to those of you who have been reading it: Thanks! Even if one reader out there has learned more about diabetes, then we are one person closer to dispelling the myths and making life easier for other diabetics. And I appreciate that.

Keep reading, my friends!

Ups, Downs, and Opinions

Shortly after M switched to Novolog, she also began lacrosse season, which usually requires a couple of weeks of adjustment.

I am pretty sure that the timing could not have been worse.

Having two major changes in lifestyle make the diabetic body, let's just say, unpredictable.

Her blood sugar was a mess. 32! 595! 31! 536! AHHHHHH!

This change and unpredictability sparked a lot of debate and discussion among those of us who were responsible for M's care.

First it was the DNE, who told me that "insulin is insulin", and that any change that was occurring must have to do with her renewed exercise levels. I disagreed, knowing that we have made this change before, and it was never quite this erratic. I did wonder if maybe M was eating food that I didn't know about, but she assured me that she was not.

Then the school nurse decided to chime in. "You need to get that insulin changed back! Ask the insurance company to change it! They will make an exception if there is a reaction that is detrimental to her health!"

The athletic trainer agreed. "It was not this bad before! It must be the insulin!"

I found these forceful declarations unfair.

I was exhausted. I was checking M's bg levels every two hours around the clock. I was stressed. I was tired. I actually became weepy a work. My coworker suggested that I take a mental health day after she asked me how M was doing, and I welled up at the thought of my daughter and her unpredictable results. I wondered daily which child I would be coming home to: the pasty gray-faced child, or the insane cranky child who felt defensive about her test results.

My diabetic students told me to hang in there; that I was doing the right thing. Monitoring bg levels regularly would give me the information that I needed.

M and I decided to give it a month. After two weeks of bi-hourly monitoring, we adjusted her basal rate rather aggressively, up in some places, down in others.

Happily, after about 4 weeks, we are back within our "normal" range.

But let me tell you, having everyone give me, a strung out parent, different advice just about sent me over the edge. I understood each point of view, and they all reflected my own guesses as to what was going on. I felt defensive any time someone felt that they could give me an absolute answer.

There are no absolute answers, no matter who thinks that just one thing will make a person's body go from insane to normal.

I knew in my gut that it had to be a combination of factors.

And while that reasoning and very careful monitoring paid off, I still feel that it would be inappropriate to tell people that they were only partially right.

Saying, "I am smarter than you are," just seems a little rude.

I may even be smarter than this car!

Left out

It happens.

I try to understand that it happens.

I tell myself that I would rather have a person tell me that they are not ready for the responsibility of watching my daughter during a sleepover party, or on a trip to the beach. I tell myself that if they are not able to deal with my daughter having Type 1 diabetes, then I do not want them to be in charge of her care in a situation when I might be out of contact for even a few minutes.

But it hurts.

It hurts me to even ask them.

And even though I understand it, it upsets me that some people are unwilling to take the risk.

She has not been hospitalized, lost consciousness, or flipped out since she was diagnosed. She knows to call me when her bg hits certain levels, just so that I can be part of her action plan for the day. And realistically, she can handle it all herself for a few hours. Odds are, nothing will go wrong.

But you never know.

If she loses consciousness, if she grows unreasonably angry, and the person in charge doesn't know what to do, it's a problem.

M's bg levels had been crazy. All over the place crazy. 595! 33! 578! 41! It didn't stop for days!

And when we finally had two days of it more or less under control, M was to go to a friend's house overnight and then join the family at Anime Boston to honor her friend's birthday.

The plans had been in place for weeks.

M was the only person that her friend invited.

Everyone wanted M to be able to go: M, her friend, me, the friend's mother.

This friend's mother is fantastic. She has traditionally been unafraid to take M for days at a time. But this was unusual. M's bg has only been back under control for a day or two.

I knew I had to make the call, and I hated it.

I explained the situation to the mom. She listened carefully, and asked several good questions.

I told her how much I hated asking her to take M under these circumstances, but I thought it was only fair that she fully understand what she was getting into.

After a few more questions, the mom stated that she would take M. She asked for contact numbers for the entire time she had M, as well as permission to treat letter in case of an emergency. Then she told me that the girls would refrain from the birthday cupcakes that she had planned to share.

I started to protest that M shouldn't be any more of a burden to her than necessary. She said, "No. It is not all right for my daughters to pig out in front of M when she can't enjoy it. We will save the cupcakes for later."

I have a friend who once told me that I can juggle a million things, and I am always in control: until my kids are sick. It unnerves me.

So, at this point I snapped: not in a bad way, but I could feel tears of relief stinging my eyes. My voice was trembling as I thanked her for her kindness, and told her how much I appreciated that she was willing to accommodate my daughter.

And I really did.

Anime peeps. Long story short, a good time was had by all.

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.