Diabetes is often referred to as an 'invisible illness.' If you met my child in the grocery store yesterday, you would never have known she had Type 1 Diabetes. Maybe with some serious eavesdropping and a base of knowledge, our discussion of the carbohydrate counts of different cereals would have given her away. On the surface, though, she didn't look different from the other kids at the store. Today she has no pockets, so she's wearing her pump outside her skirt. It's a bit more obvious.
For many years, we bought only clothes with pockets, or overalls, or dresses. These completely concealed the pump. We did this not because we were embarrassed of my daughter's disease. It wasn't even because we didn't want to answer the questions which inevitably arose on the rare occasion her pump was revealed.
We did it because my child was little. All of her friends and classmates were little too. In case you haven't been around little kids lately, I'll remind you that every one of them is interested in electronic objects; particularly those with buttons.
Initially, at 3 when she got her pump, it was in a fanny pack on her back in a case with a little luggage lock on it. We kept the keypad 'locked' as well. She spent her toddler and preschool years wearing overalls, jumpers, and leggings with long tops. The pump was out of sight and out of mind, both for her and for the curious children at the playground.
She's still most comfortable with the pocket option. It's physically the most comfortable for her, and the pump is easily accessible that way. On occasion, however, there's no pocket to be found in those cute shorts so decisions need to be made. Now that her friends are past the age where they're going to run up and start poking at her pump, she can choose fashion over function in her clothes.
On any given day, she can choose whether to make diabetes visible or invisible.
Cooked Insulin
The patient information sheet which comes with my daughter's Novalog reads, "keep in the refrigerator or at room temperature below 86 F for up to 28 days."
We do just that with vials of insulin at home. They are in the fridge (butter compartment, of course) until they're needed. Then they're in a finished room in our basement which is 'site change central' in addition to being part library, part office, part media-room and occasional guest room. Because it's downstairs, the temperature is pleasant on even the hottest days.
Once the insulin is in the pump, though, it's a whole different story. Any outdoor time in recent memory has been above 90 degrees. When she's in the pool, I've brought a cooler to drop the pump into. Yet I encourage her to plug back in whenever she's out of the water, so again it's hot. The high school, where my daughter spends each morning at her summer music program, is at least 90 degrees at this point.
It took me a while to figure out what was going on, but it's now pretty obvious that by 36-48 hours after each site change, for the past couple of weeks, those numbers have crept up. The more frequent site changes are not terribly popular here, but it's been the only solution. Fortunately, it appears that this stretch of heat is over for a few days at least.
The insulin won't be the only one happy about that.
We do just that with vials of insulin at home. They are in the fridge (butter compartment, of course) until they're needed. Then they're in a finished room in our basement which is 'site change central' in addition to being part library, part office, part media-room and occasional guest room. Because it's downstairs, the temperature is pleasant on even the hottest days.
Once the insulin is in the pump, though, it's a whole different story. Any outdoor time in recent memory has been above 90 degrees. When she's in the pool, I've brought a cooler to drop the pump into. Yet I encourage her to plug back in whenever she's out of the water, so again it's hot. The high school, where my daughter spends each morning at her summer music program, is at least 90 degrees at this point.
It took me a while to figure out what was going on, but it's now pretty obvious that by 36-48 hours after each site change, for the past couple of weeks, those numbers have crept up. The more frequent site changes are not terribly popular here, but it's been the only solution. Fortunately, it appears that this stretch of heat is over for a few days at least.
The insulin won't be the only one happy about that.
Back On The Wagon
Trying to get those numbers on paper again after weeks of summer fun distracted us from the task.
The next step will be to make some sense out of them.
So far it appears there are some nighttime basal tests in our future.
At least it's the perfect weather for sugar free popsicles!
The next step will be to make some sense out of them.
So far it appears there are some nighttime basal tests in our future.
At least it's the perfect weather for sugar free popsicles!
Counting
Don't forget to count as you eat those goldfish crackers.
There were 20 pretzel sticks in there. How many are left?
If you eat more than 12 cherries, come back.
People on diets count their calories and track how much of everything they consume.
Children, generally, do not.
It must stink to be sitting at the pool with friends, chatting about important things (or about nothing at all) while simultaneously having to keep a running tally of one's wheat thin consumption.
Where we lunched on Wednesday has the best thin, crispy french fries anywhere, and a generous portion came with my daughter's grilled cheese. I have no idea how many I picked off of her plate. I do know she ate 26 of them.
It takes a bit of the joy out of eating, this counting does. Especially in the summer when there's nothing nicer than sitting in the shade eating cold grapes or berries. Or sitting on the beach grabbing handfuls of goldfish crackers between hermit crab races. Or sitting on a pier with a fresh-from-the-water basket of clam strips and fries.
It's part and parcel of this whole diabetes thing though. And the glass-half-full part of me says 'well at least she can eat what she wants as long as she keeps track of it...it wasn't long ago when there were tons of restrictions on what people with diabetes were allowed to eat to begin with.'
And that's true.
But wouldn't it be fun to dive into that tray of chips and salsa at the next cookout without enumerating each one?
Technology
Our family entered the modern age last week.
Diabetes technology we're familiar with. I truly don't know how we survived before the remote control/meter for my daughter's pump.
Other technological advances have come more slowly though. Maybe we're a bit old fashioned. Maybe we're somewhat frugal. But finally the time had come.
First we got my daughter a cell phone. I tried, hopefully not in vain, to impress upon her that it is primarily for diabetes calls and texts to me. She's thrilled to have it!
Then I got the smartphone I'm blogging from now. Now to justify it I need help finding some good diabetes apps. Any suggestions?
Diabetes technology we're familiar with. I truly don't know how we survived before the remote control/meter for my daughter's pump.
Other technological advances have come more slowly though. Maybe we're a bit old fashioned. Maybe we're somewhat frugal. But finally the time had come.
First we got my daughter a cell phone. I tried, hopefully not in vain, to impress upon her that it is primarily for diabetes calls and texts to me. She's thrilled to have it!
Then I got the smartphone I'm blogging from now. Now to justify it I need help finding some good diabetes apps. Any suggestions?
A New Friend
My daughter has a half hour break during her music program. When they have time between classes, the kids sit in the hall. They bring electronics, card games, books, or drawing paper. Or they just chat.
One day early last week, my child sat down in the hall and then overheard a mother say to the child next to her, "please check your blood sugar before I leave."
Unsure whether she'd heard correctly, my daughter turned to the girl and said, "Did I just hear your mom ask you to check your blood sugar?"
"Yes..."
"I have diabetes too!"
"Really?"
"Yup!"
By Saturday, we were at this family's house for a cook-out.
Friendships can and do form for many reasons. My daughter has friends who share her interests in reading, or music, or softball. She has friendships which have developed over many years of being in school together, because she and another child 'just click.' She has made friends with children of my friends, finding common ground even though they did not choose each other.
Friendships based on diabetes, though, are unique. My daughter spent hours last summer playing at our community pool with a girl who introduced herself after observing a blood sugar check. The mother and I then spent hours talking about raising a kid with diabetes.
Finding someone who also lives with diabetes is like finding a kindred spirit.
Maybe it's because diabetes touches so many aspects of our lives. So by extension, people who have diabetes in common have many life experiences in common.
Maybe it's because when we start talking, we inevitably share those diagonsis stories. Most people begin a friendship discussing their work, or hobbies, or the latest town gossip. We delve right into what for many is high on the list of the most emotional and traumatic moments of their lives. It creates an instant bond.
Maybe it's akin to being in a foreign country and meeting someone who speaks your language. You're suddenly at ease. All the thoughts which are constantly cooped up in your head in 'diabetes-ese' can flow freely from your mouth for others to understand. It's comforting.
We count among our friends many people whose lives are touched by diabetes. Some of these friendships have been around a long time and deepened after diabetes became part of our lives. Some of them are brand new. All of them are wonderful people who we're, ironically, really grateful we have this bond with.
Summer is a great time to meet new diabetes friends. There's less clothing to cover those sites. We're out and about more, checking and treating at the pool, beach, park or restaurant. Maybe there are more friends to come!
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