Thursday, February 26, 2015
I ordinarily order my daughter's diabetes supplies intermittently. The strips are refilled in one month, the insulin in another. Yet because of some glitch in the time-space-diabetes continuum this week, we needed everything at once.
Ordering the strips and lancets requires a phone call during which I yell numbers and answers to yes-no questions at an automated telephone robot lady.
Insulin is a 2 step process of calling in the refill to CVS and picking it up. The third step is avoiding purchasing the discount Valentine's Day candy or the new Easter candy on the way in and out of the store.
Ordering sensors involves an unfailingly friendly conversation with someone in Utah.
Insulin pump supplies usually ship automatically but when I need to change our order for any reason, it also involves a phone call with a real person.
Taken separately, these tasks are not overly time-consuming. Sometimes there's a line at CVS, or I'm put on hold to wait for a representative. But even then, it's manageable.
What I realized yesterday was that, strung together, these activities take up a solid chunk of time.
I started at noon, calling in the order for the strips. Ten minutes. Then I called for the sensors. I was on hold for ten minutes, and spent another ten minutes on the phone with the afore-mentioned friendly person in Utah. I needed to add cartridges back into our pump supply order after using up a surplus. Fifteen minutes. Then I drove to CVS, where I waited in line for the insulin I'd ordered the day before. That was a 25 minute round-trip. Put all together, this string of tasks felt like a huge undertaking instead of the usual quick project while dinner was cooking or quick stop on the way home from the grocery store.
Put in perspective, of course, this is not a big deal. In an hour and a half, with a manageable-for-us expense, I was able to order everything I need to keep my child alive for another 3 months.
But I'd still rather spend the time and money on something more fun.
Monday, February 23, 2015
The Dexcom buzzed at 4 a.m. Low. (!!!) A fingerstick confirmed it: 60.
Still mostly asleep, I considered my usual routine of going down the hall to the kitchen, finding a sippy cup, measuring 4 ounces of orange juice, finding a straw and bringing it back to the sleepy child.
As I put the meter down, my hand grazed the junior-juice box it shares its case with. I picked it up, stuck the straw in, and roused the low person. I was back in bed in under 3 minutes.
What have we been thinking?
When she was littler, it took less than 4 ounces of juice to treat a low. So we reserved juice boxes for their convenience to carry away from home, but usually ended up throwing away half or a quarter of every one. Knowing how many ounces of a juice box had been consumed was impossible when awake in the daylight, let alone at 2 a.m. in a dark bedroom. But fast forward a few years and now, for most overnight lows, one juice box is just enough.
When she treats lows at home, during regular awake hours, she still goes for juice from a cup. Orange juice and apple cider are rare treats. Despite the circumstances, she's happy to enjoy them. Yet at 4 a.m., she's not savoring the flavor. She wants to snuggle back under the covers.
So it seems the juice box is the way to go at night. It requires no rummaging in the kitchen. It requires no lights. It's literally right at hand every time we check her blood sugar.
I wasn't sure if she'd noticed, but she did. "I was trying to figure out why my juice was so warm last night- but I noticed you used the box from the meter case."
"Yeah- I decided it was easier than coming out to the kitchen."
"I liked it. I can drink it faster when it's warm."
And everybody lived happily ever after.
Wednesday, February 18, 2015
Streaks of high blood sugar are becoming frequent visitors. I'm upping the insulin:carb ratio, the correction factor and the basal rates regularly. My methods are sometimes scientific, with thoughtful basal testing and downloading of information. Some other changes have been made more impulsively, in exhausted frustration. Either way, numbers seem to settle in for a few days to manageable if not perfect. Then it's over. She's stuck at 250 again.
So we start again. Because of her health, of course. And also because a 13 year old with consistently high blood sugar is not someone you want to live with. Trust me.
There was a time when we adjusted very few things between endo appointments. One basal rate might change, or I'd need to up the breakfast carb ratio. A little growing, or a change from school to summer schedule would require a bit of work, but not much. Sometimes we'd do nothing at all and she'd be just fine. For 3 months.
I was warned this was coming. I knew I'd have to start making regular changes in her insulin regimen. I imagined it would be hard work. What I didn't fully understand was the emotional component of the whole thing. It's akin to playing a never-ending game of whack-a-mole. There's that brief moment when all the little moles are in their holes and you take a deep breath hoping you've whacked them all. Instead they start popping up faster than before.
I'm certain my little smile at the flat dexcom line from 1 a.m. until 7 this morning will be justly rewarded with an astronomical spike before the day is out. Or tomorrow's 1-7 line will be straight at 200 instead of 108. If we ever hit a day completely in range, I'm sure it will include a request from my child to go out to lunch with her friends to restaurant with uncountable carbs, or be followed by another lethargic snow day.
This challenge, like whack-a-mole, will take some skills to get through. We'll keep looking at the big picture. We'll keep moving. We'll stay calm. We'll show the enemy who's boss. And we'll know that this era, like any game of whack-a-mole, must eventually come to an end. It can't last more than 4 more years, right?
Monday, February 9, 2015
As I rolled out of bed this morning, I grabbed Dexi for a peek.
Turns out the signal had been lost for about half an hour, which happens from time to time. It's usually not longer than that, and usually not a big deal. Per the graph, blood sugars had been been skirting the 80 line for an hour or two before communication was lost.
|I wonder if this is physiologically possible?|
I was relieved to easily wake her with a gentle rub on the back and a 'good morning.'
Meter in hand, I wasted no time checking her blood as she began to rouse herself.
Good news, if a bit unexpected.
I fed Dexi the number and followed up with another as she requested (which was close to the first) .
As my daughter put her toast in the toaster, a mere 10 minutes later, more alarms: bzzzt, bzzzt.
Impossible, I decided. Clearly, Dexi's in some sort of panic mode at this point and making wild guesses.
"Just let her settle down," I advised. My daughter actually gave the Dexcom a little pat and told it not to freak out.
By the time we'd finished breakfast, Dexi was reading in the low 100's and her imaginary crisis was over.
Friday, February 6, 2015
Roses are red
Violets are blue
I'd rather have insulin
The average cost of a rose for Valentine's Day is $5.
The cost to supply a month's worth of insulin to a child in a developing country is $5.
Spare a rose this Valentine's Day and give a child access to life-saving insulin. Share the love.
How? Click here. It's easy.
Tuesday, February 3, 2015
'Snow will change over to a wintery mix this morning after accumulations of 6-10 inches. Freezing rain will change back to snow mid-afternoon which will taper off around the evening commute. The national weather service has issued a flash freeze warning beginning at 4 p.m. and continuing through the night.'
That was the weather situation which prompted me to cancel yesterday afternoon's endo appointment. We undertake a drive averaging 45 minutes into the city through heavy traffic to visit the diabetes center. There are multiple hazards on a sunny day in June. The new-to-me concept of a 'flash freeze warning' convinced me we'd definitely be better off at home with a jigsaw puzzle.
When I called to reschedule, the receptionist was very understanding but the next available appointment was in mid-March. So it's not until then that we'll head in for a face-to-face professional assessment and help. Our usual 4 month interval between appointments will turn into more than 5.
Four months is really the right amount of time for us. As we approach each appointment, we inevitably start to build a list of problems for which we need solutions. Maybe the after dinner lows discussed at the last appointment, which were perfectly resolved for a while, have turned into highs. Or the afternoon basal rates seem way off but we haven't been successful in tweaking them ourselves. Perhaps we're considering a new type of infusion set or want to talk about a new technology coming down the pipeline. We always need a prescription or a school form or a lab slip. By three and half months, we're running out of ideas and enthusiasm. We could do some research, try new tactics, or call the diabetes center for help, but a visit is so much better.
A visit allows us to take the sum total of all of the diabetes problems we're facing and hand them over to someone else. 'Please fix this,' we say. While our endo does not have a magic wand, and therefore can't make it all go away, he can look at it with a fresh and well educated eye. His suggestions work, and are often beyond what I could have come up with on my own. He's able to put the pile of data downloaded from the diabetes devices together with the information we give him in an incredibly helpful way.
For just a part of an hour every 4 months, someone else worries about my daughter's diabetes. Someone else struggles with the countless numbers, the trends, the mysteries of it all.
For the next month or so it's still ours to think about and do the best we can with. If we're stuck with an issue that's particularly challenging, or if we need a prescription refilled, I'll call. Otherwise we're still on our own. March can't come quick enough!
Friday, January 30, 2015
This link will bring you to a New York Times op ed documentary called 'Midnight Three & Six.' The video is about 11 minutes long. If you haven't seen it, go ahead and watch. We'll be here when you get back.
In a nutshell, this is a strikingly produced documentary depicting one family's experience with type 1 diabetes. This family's experience has been scary for them. The daughter, Grace, experiences hypoglycemia unawareness. She has lost peers to the disease. The family is genuinely afraid that Grace will die from her diabetes. They are vigilant. They are anxious. They are overwhelmed. The long silences and dim lighting speak volumes about this family's experience.
Take a moment and go back to sample a few comments if you haven't already done so. Perhaps you've also seen some commentary from the diabetes online community. What concerns me are the negative comments from other people and families living with Type 1 Diabetes. There were comments from people who never check at night asserting this hypervigilance was uncalled for; ones from people who found fault with the depth of the family's fear; ones from people who believe a CGM will solve all the household's problems; and ones asserting that diabetes isn't really that bad and that these people should get over it and move on with life. There are concerns that this film does not accurately depict life with diabetes. Maybe you thought some of the same things.
To me it seems important to remember that this is a filmed snapshot of a real family and their very unique experience with this disease. The number of deaths this family has experienced from Type 1 diabetes is alarming. If I knew 4 kids who had died of diabetes in the past 5 years I might never sleep again. The mom tells us that Grace's blood sugars are unpredictable. I'll take that to mean 'more unpredictable than normal' and go on to note Grace's age of 15 which comes with its own very unique set of challenges. They are, like the rest of us, doing the best they can with the information, skills and help they have available to them.
Do we live with diabetes exactly like this family does? Does this film accurately depict the details of how we cope with this disease? Of course not. But their life is not foreign to me. I jumped every time the mom's alarm clock rang because it makes the same sound as mine does in the middle of the night. My daughter drinks Clifford juice boxes too. Grace's concern about stopping to check her blood sugar while being filmed made me smile since I'm sure my daughter would have asked if it was o.k. too.
I wonder what kind of commentary would come my way should a documentary be made about our life with diabetes. I'm sure there are ways we do and think about things which differ widely from others' perceived 'right way.' We're not perfect. But we, like this family in Texas, have been handed the impossible job description of 'acting pancreas.' No film could ever depict the multitude of ways people end up acting and feeling when the diabetes diagnosis is handed over or in the years that follow. I can only guarantee you that nobody is perfect at it. We can only do our best.