Snowed

Have you ever avoided looking at your bank statement?

Most of us at one time or another (not you, Mom!) have been aware that our bank statement would only provide us with the bad news that we already knew - that we didn't have enough money in the account, and there were still bills that had to be paid, gas to be bought, and food to be picked up from the grocery store.

Rather than face reality, some of us might go ahead and buy the groceries and fill the gas tank. Then we would figure out what was left (if anything) to pay the bills.

If you are one who has had this experience, then by the end of this post you will feel a lot of sympathy for M.

When I returned from my trip to Spain, I of course asked M how her blood glucose had been while I was away. She said, "pretty good."

Not completely trusting her memory, I asked her to Carelink. The printout did indeed show some pretty good bg, especially starting a few days before my return. I was pleased and relieved that she had done so well without me.

As I was, evidently, not satisfied with leaving the country for two weeks,  I did my laundry and packed up. M and I headed to Manomet, MA for a week of fun and sun at the beach with Auntie, cousins, Nana and Papa.

There is typically a lot of tempting food with high carb counts when we go to the beach with the family. But I have always felt that M had to learn how to cope with situations where the food selection was less than ideal, rather than force her diabetes-style diet on everyone else while they are on vacation.

Despite the breakfast sandwiches, the potato chips, the candy, and the ice cream,  M reported that her bg numbers were generally in the high 100s (173, 157, 144 etc.) "Not bad," I thought. "I guess that walking-along-the-beach thing is really keeping her numbers in check."

But as a few days went by, M didn't have any bgs over 200.

I began to grow suspicious.

"When exactly was she checking her bg?"  I wondered. I wasn't seeing her do it. Was she doing it in her room so that it wouldn't bother her cousins at the dinner table? Or was she not checking it at all?

To test her reaction, I asked M to check her bg in front of me.

She checked it. Then she told me the results, but didn't show me.

I asked to see her meter so that I could see the results from the previous days. I tried to sound casual.

This is where it hit the fan.

When we asked her bg meter to "show all results", it showed only 5 readings from the past 7 days.

One of them was the one she did right in front of me.

That's right, folks. M had only checked her bg 5 times in the last 7 days! The pump manufacturer recommends a minimum of 5 tests per day.

Needless to say, this is not healthy diabetic behavior!

M tried to convince me that she had been checking her bg several times every day, that there must be something wrong with the meter.

HA!
I was a teenaged girl myself, once. Covering one's butt is high on the list of priorities when one makes a bad choice.

What I didn't know, was how, exactly, M got the Carelink readings that showed up on her printout?

I learned the answer when, later during our vacation, circumstances required that M enter her bg manually into the pump itself.

Aha! M had been estimating (aka guessing) what her bg was, then entering it into the meter so that it would administer the appropriate bolus. The printout comes directly from the pump, not the meter.

So on any given day, M might think to herself, "Hmmm. I would like a snack. I will have a cheese stick and some grapes. That's about ten carbs. And I feel fine, so I'll enter 143 for bg levels and take whatever insulin the pump decides I need."

For all of you out there in blog land, in case you didn't know, this is a BAD IDEA.


If you guess too high on your bg levels, you are in danger of going into a bg low, for which side effects include, shakiness, dizziness, weakness, and, oh......death.

If you guess too low on your bg, you will not get enough insulin into your system to keep you healthy. Long-term side effects include kidney problems, loss of vision, poor circulation, and, of course, death.

It was time to have a talk.

M and I had a heart to heart. It included my understanding how it feels not to be in control of your life; to be tired of knowing that you must always be thinking about your health, and not wanting to talk to your parents about it.

When we returned home, I let Bill know that we had been snowed. We had pulled back from our responsibility, and allowed M to monitor things herself. In pulling back, we allowed M's choices to go unchecked for a couple of weeks. Now it was time to bring down the hammer. Sympathy and empathy aside, M's health is too important for us to let it go.

Accepting our decision, and our sense of urgency, M has had a (probably temporary) turn around. Her attitude its better, and she is checking her bg 6 times per day. It is too high, but now that we know truly what we are up against, we can put together a plan of action.

Together.

Not anymore, M. But it was a nice try.

Killjoy

So the first thing I want to say before I tell this story is that diabetes is the killjoy here. Not Auntie Jeanne.

As a Spanish teacher, it is wise for me to periodically visit a Spanish-speaking country so that I can keep my knowledge fresh and up to date. This year, I went.

Which meant that, since Daddy has to work all day, M was to be left to her own devices for 11 days.

Auntie Jeanne saw the opportunity to spend some quality time with her goddaughter and seized it. The two of them chose to go zip-lining and generally hang out for a couple of days.

Now Auntie Jeanne is a medical professional, and has been asking me good questions about M's diabetes from the start. She files this information away for future use.

But then it comes back to haunt her.

Things that Auntie Jeanne remembers include:

1) M does not do as well managing her diabetes on the road as she does at home
2) M needs frequent snacks when doing physical activity
and for carb absorption:
3) Foods with fat and sugar in them are better than foods with just sugar in them

After a long day of swimming and running around, M informs Auntie Jeanne that she is hungry and would like a snack [2) M needs frequent snacks when doing physical activity]. She states that she would like some ice cream [3) Foods with fat and sugar in them are better than foods with just sugar in them]. Auntie Jeanne agrees and decides to take her to the local ice creamery for what she anticipates will be a small dish of ice cream.

When they arrive at the the ice creamery, M peruses the menu and decides that perhaps she would like a hot fudge sundae. "Uh-oh", Auntie Jeanne thinks, "3) Foods with fat and sugar in them are better than foods with just sugar in them."

But as M continues down the menu, she decides that she will have a milkshake. "Hmm," thinks Auntie Jeanne. "That's more ice cream than I'd like to see her have, but 3) Foods with fat and sugar in them are better than foods with just sugar in them."

As they continue to wait in line, M declares that she would like to have a malted milkshake.

Now up until this point, all of Auntie Jeanne's misgivings have gone unspoken. She is the fun Auntie. The one who lets M do stuff she doesn't always get to do at home. Sometimes "stuff she doesn't do at home" includes extravagant food choices, such as having shrimp for breakfast, lunch, and dinner.

But the word MALTED catches Auntie Jeanne's attention. She thinks, "What is malt, exactly? And why does M want it?"

So she breaks her silence and asks, "So what is malt?"

M says, "It's a thickener. It makes the shake taste really yummy."

Jeanne's brain processes this information. It seems to her that malt is some kind of grain, which means added carbs, which means that the rule of small numbers is likely to be broken, which means that M's bg could become pretty high, because 1) M does not do as well managing her diabetes on the road as she does at home.

Auntie Jeanne thinks about this to herself, and makes no comment to M. After all, M is supposed to be having fun. On the other hand, Auntie Jeanne is responsible for M's general health while M is in her care. On the other hand again, M is a surly teenager, and at times grows frustrated when others tell her how to manage her diabetes.

Auntie Jeanne hems and haws about whether to let M know about her concerns.

M interrupts Auntie Jeanne's thoughts. "Do you think I should get the malted milkshake, or just a regular milkshake?"

Auntie Jeanne, relieved, says, "Well, since you brought it up.... I think you should have the regular milkshake, because I think it will be lower in carbs."

M looks at Auntie Jeanne and sighs. "Yeaaahhh. I know." She sighs again.

Auntie Jeanne, feeling badly, says, "Sorry, but somebody has to be the killjoy ."

M says, "Yeah, I have a lot of those in my life."

No, M.

A lot of people have those in their lives. But you have a super-extra-annoying one, that most kids don't. While some girls your age forgo the malted milkshake to avoid packing on extra pounds, you have to do it to keep yourself from getting sick.

Good for you for recognizing the smart thing to do.

Good for you for asking Auntie Jeanne to verify what you already knew.

And good for you for making the better choice.

And nobody is sorrier that you had to make that choice than I am.

Except maybe Auntie Jeanne.

Diabetes: the ultimate killjoy.

A malted milkshake, hold the malt.

Flying solo

M made her first no-joke solo travel attempt this week. She had to fly from Indiana to our New England state all by her little lonesome.

Once her flight took off, I received a call from her grandmother.

"She's on her way!" she said, cheerily.

"How was security?" I asked. After all, not only was this M's first solo flight, it was also her first flight with a pump. I remember being behind someone with a dialysis machine at airport security right after 9/11. Needless to say the experience was less than pleasant for all involved.

"It seemed fine. We could have escorted her to the gate, but she said that she could do it herself, so we watched her go through security, and it seemed to go just fine."

Well, this sounded like good news. When M received her pump, she also received a medical device card that says, "I am wearing a required medical device prescribed by my physician" and includes general information about what to do if she acts peculiar.

Just what constitutes "not peculiar" for a teenaged girl, I would like to know.

After a few hours, I went our local airport to retrieve M. Aside from looking about a foot taller (a common side effect of gaining valuable life experience), she looked great.

I asked her about airport security.

She said it was fine.

She didn't have to remove the pump. She did have to go through the metal detector. Then she had to have her hands swabbed with a cotton ball. The cotton ball was then tested, presumably for explosives, and she was sent on her merry way.

She thought that whole thing with the cotton ball was weird, and nobody explained it to her until I gave her my theory at home.

But it sounds like the TSA gets the whole insulin pump thing, which made M's life easier and less stressful.

So, yea! My baby's home!

Who has an embarrassing mommy who loves her? You do! That's right, yes you do!

When she's away

M has been visiting her grandparents in Indiana this week.

I admire their can-do attitude. After all, living so far away from our New England home, they really aren't exposed to the daily inconvenience of living with Type 1. But they are unafraid. They enjoy M and her love for life. They know that she is capable, and they invited her to come visit them for the week. Just her and them.

I talked to her on the phone and it sounds like she is having a ball. And she claims that her bg levels are good.

I find this last piece of information believable, actually. I have to say that her bg levels have been pretty good lately, with very few highs over 200, and an average bg of about 140. We will Carelink her when she gets home, though, just to be sure.

She will be flying home solo. I can't wait to hear about her going through airport security on her own with her insulin pump.

In the meantime, it's been pretty quiet around here. (Not at work! That's been crazy!) At home, where there was some raucousness, there isn't any.

Here are some odd things that reminded me that, although my D-daughter was not here all week, I am clearly a D-parent.

• While sweeping the floor, I picked up purple needle covers from an insulin pen that M hasn't used in two months.
• I set aside the french fry bag at dinner the other night, so that M could calculate how many carbs she was going to consume. After about 20 minutes of it sitting there, I realized that no one was going to use that bag for anything.
• I made sugar free pudding, when there was perfectly good sugar filled pudding on the shelf.
• I kept picking up the insulin bottle on the kitchen counter to check how much was in it.
• I made too much bacon for Saturday breakfast. Bacon is M's favorite 0 carb food. Leftovers are usually non-existent.
• I picked up the sharps container to check how full it was. Twice.

They're these little things we never think about. I just do them because they are a constant part of life; like feeding the dog or shaving my legs.

The good news is that I won't feel so crazy doing any of these things once M gets home.

Now if only I would stop talking to the dog when I am alone....

I don't know what you're saying, but it had better involve bacon.

Lions and Angels

After M was diagnosed, several people told me that I simply must send her to diabetes camp, that it did wonders for their child, niece, grandson, the neighbor's kid.

The fact of the matter was that M was diagnosed at a very inconvenient time. Inconvenient because a) I was broke, and b) camp sign-ups were already done for the year.

A buddy of mine from church also asked if I was planning to send M to diabetes camp. I told her that I would like to the following year, but I wasn't sure if I would or not. She was wise enough to read between the lines, and told me that she was part of the Lion's Club. These are the same people that collect old pairs of glasses to help people who can't otherwise afford them. She said that they usually have scholarships for kids going to diabetes camp. I told her I would keep it in mind for the following year.

The following year, my buddy reminded me to apply for a scholarship for M. I didn't think we'd qualify, and I was afraid that even if we did, we would not be able to pay the balance. We were getting by, but things were really tight. I thought we might have to pass up camp again this year.

Then Auntie Jeanne stepped in.

Auntie Jeanne is M's godmother, guardian angel, and fantastic human being. In fact, when I discuss her with people outside our shared social circle, I refer to her as "Auntie Jeanne" so that she will not be mixed up with any of the other, less important, Jeannes in my life.

Auntie Jeanne offered to pay for a large chunk of M's diabetes camp.

I cried.

Then I applied for the scholarship.

The Lion's club paid $900 of M's camper fees, leaving only $300. Jeanne paid the balance.

I am so grateful for groups like the Lion's club, who make it possible for kids like mine to attend a camp that would otherwise be out of their reach.

I wept again after dropping M off at camp, so grateful that my daughter would have this opportunity to be with other kids who had to watch what they eat and inject themselves with insulin. I am not glad that there were so many of them, but I was glad that they weren't alone: that they had to explain nothing to anyone. Although the focus of camp is diabetes, in some ways it is like a diabetic vacation.

M was a big hit at diabetes camp. She went bass fishing, wrote at the camp newspaper, made videos, went swimming, and generally had a ball. People hugged her like mad when she left.

And she can't wait to go back.

Have a nice day

I always hearken back to "Things not to say to the parent of a type 1 diabetic", but am still astonished at what people will say to me and M when we are out in public.

I suppose that some of it is my fault. After all, I am not a big privacy person. When people ask questions, I give them answers. Then they feel free to tell me things I don't want to hear.

Case in point: we are in the Payless, a shoe store, for those of you who do not know. We are seeking somewhat fancy shoes for the somewhat fancy occasions of M's 8th grade graduation and her cousin's christening.

Nearly all of the shoes are thongs. In other words, they have a strap or something that is designed to station itself between the big toe and the second toe. All diabetic literature forbids this style of shoe. Diabetic feet are very sensitive and prone to infection. Putting something between your diabetic toes that will rub, get moist, or possibly break the skin is super bad news.

I can't tell you how many times I have heard about diabetic feet getting amputated.

Fortunately, M seems to find potential amputation to be motivation enough to stay away from some pretty cute shoes.

At this particular Payless, there is an extremely helpful sales clerk, who is always there to help us find things. She has a lovely accent that I cannot quite identify, but I suspect she is a native speaker of Portuguese or Latin American Spanish.

As usual, she was eager to help M find the perfect pair of shoes. She pulled out pair after pair of thonged sandals. M politely declined each pair in turn while seeking sandals without the forbidden thong. The sales clerk was persistent, which is typical of her, pointing out "how cute" each one was.

M said, "They are cute, but I can't buy that kind of shoe."

The clerk looked confused, "Can't....?"

I chimed in, "She has diabetes. Her doctor doesn't like her to wear that kind of shoe."

She nodded curtly and searched diligently for appropriate shoes. We found a pair that worked, and brought it up to the register.

This is when the fun happened.

"You have diabetes? You are so young to have diabetes. So you can't have candy, right?"

M replied, "I do watch what I eat, but I can have candy once in a while."

"Oh no, you can't. My dear cousin, Esmerelda had diabetes. She was such a sweet girl. She ate candy. And do you know what?" she asked in a hushed voice, "She went blind."

Ah, the old "she went blind" story. Always a favorite for me. There are enough youtube videos about this to fill a 10 disk DVD set.

Awkward, but not finished. Apparently reminding me that my daughter might go blind in her lifetime wasn't quite enough. She was going to have to scare M as well.

Our sales clerk continued, "She is no longer with us. She was a sweet girl, but she didn't take care of herself. She left behind a young daughter, too. It was such a shame."

I thought the clerk was going to tear up, a prospect for which I was unprepared. M and I had settled into a patient silence while we waited for her to wind herself back down.

She smiled sadly at us, but finally rang up the shoes with this final missive: "Watch that candy!"

Ummmm. Thanks? Have a nice day!

Ooof! I wasn't expecting that!

Run away

We had a visitor recently. Two actually. My sister and a close friend from college came over to socialize.

I hate to say that this is a rare occurrence, but it is. We are all of a certain age when running children to various events and activities, coupled with our desire to earn enough money to pay our copious bills kind of eats into our social time. Nonetheless, an effort was made, and we managed to pull it off.

My kids are social animals, and so were excited to see our guests. We cooked some burgers on the grill and sat on the porch talking until the mosquitoes came out. The adults then sat down to a game of cards in the dining room. M sat at the computer, facebooking or something, while her brother chose to play video games in the next room.

We had had burgers, as mentioned before. M had one and with it, she had a nice big bulkie roll. A bulkie roll is about 39 carbs all by itself, plus, as bread is a fast-acting carb, its  effect on M's bg levels can be somewhat unpredictable. In cases like these, we typically test M's bg levels about 2 hours after eating to determine if any action must be taken.

With my back to M, I casually ask her to test her bg.

She tries.

I hear an exasperated sigh as her test strip makes itself useless.

With M's old (pre-pump) test strips, M had five seconds after it absorbed her blood before we learned the results. These new strips start the five second countdown immediately upon contact with blood. If she doesn't bleed enough onto the strip, it malfunctions, giving an obnoxious reading like "failure" or some such thing on the screen of her bg monitor.

She tries again. After a moment, I notice her slip up to her room.

My sister reports that she made a face before ascending the stairs. I finish the hand, and go up to check on her.

What I encounter surprises me. It is sheer panic, personified.

M is shaking, red-faced, and teary-eyed.

Gently, I ask, "What happened?"

Shrilly, M responds, "My blood sugar was really high!"

Quietly and calmly, "How high?"

Panicked, "Really, really high! 525!"

Wow, that is high. I pause and quietly ask if M has checked to see if her pump is working. She tells me in a high pitched tremolo that it said "No delivery" on the screen, so she pushed the buttons to administer the dose again.

I check the pump. On the screen I see that it is indeed counting down the dose that is being pumped into her body.

"How much did you have to administer?" I ask.

"19 units."

"Well, let's set the kitchen timer for 20 minutes and see if it your bg is headed in the right direction. If not, we'll give you an injection and change your infusion set, okay?"

She nods and tells me that she's scared. I hold her and tell her that I'm glad that she knows that this is serious, but that we will take care of it. I keep calm by reminding myself that her bg was likely this high for at least a week before she was diagnosed, and that she will not die in the next 20 minutes while we wait to see if the pump is working.

I head downstairs to play cards some for a little while, and dutifully set the timer.

After a very long 20 minutes, I ascend the stairs to check on my daughter. She has changed into her pajamas, and looks a little more relaxed. We test her bg: 228.

Well, now we know that the pump is working, which is a relief. M decides to bolus again, to continue to correct her bg to more normal levels. I allow her to make the call, and we agree to check her bg again in a half an hour, to make sure that she didn't over correct.

I join our guests at the table, who are witness to the joys of worrying about one's diabetic child. My friend reaches over to sympathetically trace the furrows in my brow. I always joke with my students that I need Botox thanks to them, but maybe it is this: worrying about my children, especially the one with the life-threatening illness.

M comes downstairs and sits at the table with us. She is relaxed. Smiling. Sociable. You could almost say that she is a whole other person. We check her bg again. It is 103. This whole other person is the one I am used to: the one who is pleasant, rational, and friendly. The one I knew before the diabetes.

Later M and I have the required discussion about a) making sure that you tell someone when you need help, and b) not hiding from the people who can help you.

At one point in the evening, my friend ad asked, "Do you think she ran off because I am here?"

And I reassured him, saying, "No, I think she just panicked."

But guess what? During our conversation, M told me that the reason she ran off is that she didn't know what to do with guests in the house. She was embarrassed, confused about how to be polite, and of course, somewhat irrational due to the high bg levels.

As far as WHY the bg levels spiked so high that night, we don't really know. I have my theory, which is that when M went to administer her dinner dose of insulin, she did not push the delivery button twice as required (for confirmation). It is the most logical explanation. But M says she distinctly remembers pushing the delivery button twice.

Not wanting to argue with her after her ordeal, I relent, and call it a mystery. Then again, what else could cause her bg to go up by over 350 mg/dl in two hours? I am hard pressed to think of another explanation.

Don't do this next time, please.