A Security Story


As we arrived at the airport security gate on our way to Florida, my daughter disconnected her pump. "This needs to be visually inspected. It can't go through any of the scanners," she informed the TSA agent.

"That's what you'd like to do?" was the reply.

"Yes, please."

We walked through the body scanner and met the agent on the other side. We stood near him as he swabbed the pump to check for explosives and then returned it to my daughter.

Meanwhile I watched our toiletries and my carry-on bag slide into the 'to be inspected' holding area instead of continuing along the conveyor belt to be retrieved.

The first thing I was asked about was the Frio insulin cooling case.

 
 
"It's a gel cooler for insulin," I explained. "It has a vial of insulin and an insulin pen in it." The TSA agent handed it back, satisfied with the answer.

He still had my large backpack. "Anything in here you can think of that would have caused this to be pulled aside?"

"Um- it's got lots of diabetes supplies...syringes, insulin pump infusion sets, glucometers...I'm not sure what might have caused the concern."

So the TSA agent, who was very nice, rummaged through the bag, pulling out every make-up case and Ziploc bag, methodically opening and examining them one at a time. When those were all on the metal table and the only things left in the bag were books and a few other obviously safe items, he sent the backpack through the x-ray machine again.

"Okay- you're good to go," he said upon his return.

I observed the collection of items spread around the metal table, all of which needed to be fit back into the backpack in a way that would enable us to access the important ones during our flight, and stifled a laugh.

"Easy for me to say," the TSA agent said with a friendly smile as we started to repack.

It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  

A Test Strip Story for World Diabetes Day

 
"Hey look- it's a test strip. It's not the kind I use."
 
 
This is a zoomed-in shot, and cropped. The test strip was virtually hidden in the sidewalk crack at the busy amusement park. Yet it caught my daughter's eye.
 
Finding a test strip "in the wild" meant that another person with diabetes had been there.

Whose was it? Was its user still around? Did the blood sugar it recorded require a $4 soda from the snack stand or a break from the rides? Was the person local or travelling? Type 1 or Type 2? Newly diagnosed or an old pro? Comfortable with diabetes care on the run or not?

We had a distinct curiosity about, and sense of kinship with, whoever dropped that strip.

Other people with diabetes, even complete strangers, hold a special place in our hearts.

The same sense of connection fuels my interest in World Diabetes Day. There are millions of people around the globe living millions of very different kinds of diabetes lives. But they're all living them because Dr. Frederick Banting, born 126 years ago today, discovered and bottled insulin.

What, I wonder, are their struggles? Successes? Stories?

Do they think about being part of a global diabetes community, and if so does it give them the same sense of hope it gives us?


It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  


 
 

Vacation is For Fun

 
We accomplished all of our 'must-do's' on our visit to Universal Studios Orlando for my daughter's 16th birthday.
 
She used a wand to cast spells around Diagon Alley and Hogsmeade.
 
We took a wild ride through Gringotts bank.
 
After touring Hogwarts' interior, we experienced a high flying adventure over the castle and its environs.
 
We watched the Frog Choir and visited Olivander's Wand Shop.
 
We met the Knight Bus driver and the conductor of the Hogwarts Express.
 
She drank Butterbeer in Diagon Alley. Twice. She bought a bag of candy from Honeydukes in Hogsmeade Village.
 
 
 
 
She carried that bag with her and sampled Sherbet Lemons, Fizzing Whizzbees and Gummy Frogs throughout the day.
 
Her birthday dinner at Margaritaville included a virgin strawberry daiquiri and a complimentary red velvet cake dessert.
 
Did we count the carbohydrates in everything perfectly? No.
 
Did the walking make her blood sugar drop so that Fizzing Whizzbees became not only fun but medicinal? Absolutely.
 
Did she enjoy every moment, sip and morsel and live to tell the tale? Yup.


It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  

A Letter


We received a letter in the mail the other day about a health insurance claim.

"The claim is on hold. It's important that we hear back from you within 45 days or we may not be able to process the claim," the letter read. Before this particular claim could be processed, our insurance company needed to know if my daughter was covered by any other health insurance plans.

I assumed that this claim was for insulin pump supplies or Dexcom sensors; for some very expensive diabetes-related claim.  Those seemed like the types of things which would suddenly flag her file requiring a double-check that nobody else might be in the position to foot the bill.

Nope. The big bill flagged for possible nonpayment? My daughter's flu shot.

I had a surprisingly quick phone "conversation" with an automated computer lady during which I was able confirm with her (it?) that my daughter has no other health insurance coverage. Now her five minute visit for a basic flu shot will be covered.

Presumably so will the next round of very expensive diabetes supplies.



It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  

The Unconcerned Hostage


'I'm high and won't come down in the nurse going to change the site,' the text read, belying the fact that she's takes Honors English.

My daughter changed her pump site on her own, no problem, and we texted a bit about dosing insulin afterwards to bring the high blood sugar down.

As it turned out the nurse was at lunch and a favorite teacher was covering the nurse's office until her return.

Then this text: 'She wants me to stay until I come down more what should I do??'

After a little more (still unpunctuated) communication, we clarified that the nurse would be back in about 15 minutes and wanted to see my daughter before she returned to class.

We chose not to negotiate an early release. We might have argued if she'd been missing Chemistry instead of Driver's Ed, or if there hadn't been a favorite teacher to chat with.


It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  


#November





It's November...Diabetes Awareness Month! My plan for this month involves stories...simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, just snippets of a day with diabetes, with as little context or editorializing as possible. And I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.

I think everyday stories have an incredible power to educate, break down stereotypes and stigma, and create energy for change in ways that straight facts do not. 

Great minds think alike, I guess, since I learned this morning that JDRF and ADA are both encouraging storytelling this month as well. We're encouraged to make this invisible illness a bit more visible; using hashtags, of course.

The American Diabetes Association has introduced the hashtags #DearDiabetes and #thisisdiabetes.

JDRF encourages continued use of their current go-to, #T1DLooksLikeMe and has added #T1DYouDon'tSee for this month's festivities.

So stay tuned for some stories this month. I hope they encourage you to tell your own.

No News

 
A couple of days ago, my daughter's Dexcom stopped sending data to her phone. So therefore her phone has stopped sending data to my phone.
 
Because we have a Dexcom G4 model with a receiver she keeps with her at all times, and because this receiver is still streaming her data, this is really no big deal. She never looks at her data on her phone, only on the receiver she wears on her person, so she was unaware, until I informed her, that the phone communication piece had stopped working.
 
Interestingly, I also did not notice for over 24 hours.
 
We know how to fix this problem. It's a glitch which happens occasionally and is repaired by disconnecting and reconnecting the Bluetooth connection between the receiver and my daughter's phone. It takes several minutes and sometimes a couple of tries, but it's not a big deal.
 
Yet now it is Friday and I still have "NO DATA." This is not a surprise, since everything about the past two days is a complete blur. In addition to the usual school schedule there have been 3 or 4 hour evening band rehearsals, a stage crew meeting for the fall play, the usual mountain of homework, and I think she managed to eat and sleep.
 
Having NO DATA at my immediate disposal has been interesting. I don't miss the alarms and the concurrent worry. I am not feeling anxious about missing the highs and lows, trusting that my daughter is handling any issues on her own, and knowing that she would have informed me had there been any major problems requiring multiple juice boxes or site replacements. We're still using the receiver in our bedroom at night to alert us to any nighttime blood sugar excursions, so I would have been involved in any overnight issues anyway.
 
No news is not all good news, though. What I do miss is being able to look at the big picture. One peek a day (or noticing alarms at the same time every day) provides an opportunity to fix problems in a timely manner. And, while I'm the third string back-up for any marching band emergency, I do miss being alerted to any significant blood sugars while she's at those nighttime rehearsals.
 
My daughter has a quiet evening tonight before the last big weekend of marching band. She'll need to get some homework done and practice the piano, but she'll get to eat dinner without homework in front of her, and maybe even watch a favorite t.v. show.
 
And she'll find a few minutes to reconnect her Dexcom to her phone, just in time for what promises to be a chaotic weekend diabetes-wise.
 
Cue the alarms.
 
 

Too Much Trouble

 
I wanted a loaf of the homemade bread.
 
Probably the apple crumb, but there was also a blueberry strudel one.
 
I looked them over, picked them up, read about where they were made.
 
They were rather expensive, but they looked amazing.
 
I imagined having a slice with my coffee the next morning, or maybe for dessert that very night with tea.
 
If I bought it, though, I would have to share it.
 
Then I'd have to help figure out how many carbs were in it.
 
I'd have to wonder all night, or all morning, whether I'd guessed right.
 
I might be up giving juice at 2 a.m., or distracted every few minutes by Dexcom alerts all morning.
Chances are the bread would be good enough that my daughter would want another slice.
 
The whole guess/wonder/deal with the outcome process would begin again.
 
We'd already had cider donuts as an afternoon treat. We'd all enjoyed random but delicious treats the night before at a marching band event.
 
I was tired of guessing carbs and dealing with the aftermath.
 
I did not bring home any bread.
 
It was too much trouble.
 

Our Options Can't Include Going Down With the Ship


Sooner or later we'll be contacted by Medtronic and offered a Minimed 630G to replace our Animas Ping. Under the Medtronic/Animas agreement, this pump will be at no cost to us since our Ping is under warranty until March 2021. Any other option will, even with the other pump companies' enticements for former Animas customers, come with expense.

The other two automated insulin delivery systems on the U.S. market (besides Medtronic) have their draws. They're both working with Dexcom, and we have a high degree of confidence it the Dexcom CGM system we currently use. Tandem's user-friendly touch screen, new technology and small size are appealing. Ominpod is the only waterproof system left on the market, and it has (by definition) remote control bolus programming, which is one of our favorite features of the Animas Ping especially when the pump is under a dress or buried under layers of a marching band uniform.

Tandem and Omnipod have their downsides too.

Our insurance company now has an exclusive contract with Medtronic for tubed pumps. A switch to Tandem could still be possible, as was sticking with Animas, since my daughter is still in the 'pediatric' category, but by 2021 she'll be considered an adult. Not only do I worry about the insurance coverage, the newness of Tandem is a double-edged sword in my book. While I hope they're on strong footing, I worry they're not yet established enough and I would hate to repeat our current scenario with a company going out of business.

OmniPod's relative stability in the market would make me less nervous, and they do contract with our insurer. We'd still have to pay to switch, since our warranty will be Medtronic's until 2021. But all of that's irrelevant since my kid doesn't like the idea of wearing something as big as a pod on her body and so she will not consider Omnipod, no matter what other features it may offer. It's the only option we've ever had real conversations about switching to, and the answer has always been the same. She likes the potential for invisibility a tubed pump offers. She's concerned not just about the obviousness of the pod, but also the awkwardness under clothing, knocking it off walking through doors, and how it would feel to sleep on it, all of which people get used to but which is still no small concern.

Theoretically we could also include multiple daily injections in the list of options. Or rigging up our own system #wearenotwaiting style. These are not, however, part of our family's conversation.

So, while we have at least the illusion of a choice here, I'm not sure it's much more than that. Financially, Medtronic makes sense. In terms of long-term corporate stability, they also seem like our safest bet. Their product feels the most similar to what we're using now. And in terms of leading the charge towards the artificial pancreas? They're in the front of the race so far.

When we ordered our Animas earlier this year, there were rumors the company might not make it. We certainly knew they weren't likely to release the next big technological innovation. But our warranty was up, and there was nothing compelling enough about what was on the market last winter  to convince us to switch to a new system. We stuck with what we knew, knowing that in 2021 we'd likely be jumping ship to join whatever company was closest to an artificial pancreas by then.

We're going to be thrown overboard instead, and for now it looks like our most viable life raft is Medtronic. We'll hold onto our tried and true Animas as long as we can but we can't go down with the ship, so change is coming whether we like it or not.

Animas No Mas


I poured my second cup of coffee this morning and opened Facebook.  There were pictures of a friend's new kittens and links to political commentary. And then this:



As the parent of a person who will, on Saturday, have been infusing insulin via an Animas pump for exactly 13 years, I have layers of concerns which range from the personal to the way this company's closure shapes the marketplace.

Today we'll begin at the beginning and consider the announcement itself. I learned the news on Facebook. Because I follow 'Children With Diabetes.' They posted a link to an undated, legalese-y notice posted on Animas' website.

We, as I mentioned, have been this company's customers for 13 years. Animas has our email, phone numbers and home address. We have not yet been directly notified in any way. Johnson & Johnson is a huge company. Surely they have a communications arm which could have handled this better? Direct mail timed to arrive today? A call or even a robo-call? Even something as simple as emailing the notice currently on their website. Not only does this feel unprofessional it feels a little like a bad teenage break up... Maybe if I tell enough people I'm gonna break up with her somebody'll put it on Instagram and I won't have to tell her.

Animas' notice includes the following cryptic lines for people in our family's particular situation:  If you are on a pump with a warranty that expires on or after September 30, 2019, you or your pump supplier will be contacted by a member of the Medtronic transition team concerning the option to transfer to a Medtronic 630G insulin delivery system at no cost. This sentence left me with more questions than I had to begin with.

Medtronic, it seems, has a better communications team. I found a link on Twitter to a clearer, kinder explanation. There was a nice line acknowledging that the transition will be "tough." There was also a very well laid out timeline chart which reassured me that customer support will continue to be provided for in-warranty Animas pumps through September 2019 and that we'll be contacted that May to discuss switching over.

But, according to the tiny bit of information I've gleaned so far, we'll be required to switch to Medtronic since we got a brand new Animas Ping system in March of this year, with a 4 year warranty.

Not only have we been broken up with terribly inconsiderately, we now have no choice over who to date next...

More on that next time.




The Drop-Off Line


For a couple of years now my daughter's had a little inventory she's run through before leaving the house for almost anywhere, except, for some reason, school:

"Phone. Meter. Dexi." If one of them isn't on her person or in her bag, she'll go get it. If she's got it all, she heads out the door.

On day seven of school I received a text: I forgot Dexi. The Dexcom receiver was, indeed, still sitting in the kitchen.

Day 10 brought a similar text, except she'd also forgotten the meter:



The school is only a couple of blocks away- a two minute drive at the most. Unless it's 15 minutes before school starts. Then it's an excruciating crawl with both vehicular and foot traffic clogging every route and intersection. Which is why, no matter the weather, and even though it's essentially a straight uphill climb, my daughter walks to school.

Accessing the school after classes begin is, as I learned last year when dropping off the Dexcom receiver, it's own kind of challenge. I was buzzed through two sets of locked doors and talked with a couple of school personnel, after which my daughter had to run through the nurse's office between classes to pick up the missing item.

So I drove to school, both times, pulling into the drop-off line with my flashers on while she ran out of the building to take things from me through the open car window before the first bell. She was efficient both times, but I imagine the people behind me still looked on with a combination of confusion and irritation.

While the texts may look terse in the photo, my daughter was, in person, both upset she'd forgotten her supplies, and incredibly grateful that I could drop them off. There's a spare meter at school, which she could have grabbed from the nurse's office if she had needed to. But the absence of the Dexcom info she's used to relying on made her uncomfortable, especially in the first week or two of school when the routine is still new and is therefore messing with her blood sugars.

"Phone. Meter. Dexi."

The inventory is now part of our morning farewell routine. If she doesn't say it, I do. One of the perks of our current house is that I, theoretically, should never have to withstand the ordeal of the morning drop-off line. Nobody should have to do so without a child in the car.


Back to School Year #13


My daughter went back to school this month- for the 13th time if we include the preschool years. It's still never easy.

Back to school is a challenge for most kids. There are difficult teachers, tough social situations, and strict schedules to keep.  But for my kid and many like her, fall's biggest stumbling block is diabetes.

The back-to-school diabetes problems are ever-present, but not always the same. Some years there's a new nurse who we have to meet and coordinate with. Some years there's a new activity which coincides with the start of school, adding another diabetes thing to think about. Some years the time of lunch has changed (like the 'year of brunch,' linked for you here though I'm going to choose not to reread and relive the horror). Some years gym proves to be a seemingly insurmountable obstacle (like last year, when at some points it was simultaneously terrifying and ridiculous). Some years there's a teacher who just doesn't quite get it. Or one who's extra nervous. This year we've added a daily walk to school, just a couple of blocks but most of it straight uphill.

There's one back-to-school diabetes challenge that's constant from year to year: the overall change in the daily schedule. August is lazy- featuring vacation, the backyard, books, friends and the pool. For the past couple of years August has also included sleeping late at least a few days a week, and alternate sedentary stretches of binge-watching Netflix and power-finishing summer homework. Going from a slow, sedentary start to 6:30 a.m. breakfast followed by a brisk walk to school would be a jolt to anyone's system. Adding diabetes requires an annual investment in juice boxes and a lot of dosage tweaking.

By the fourth day of school this year we'd already changed the breakfast bolus ratio and several basal rates. Twice.  And she was still eating glucose tabs every day half an hour before lunch. We've gotten that to the point where she's usually just barely 80 at lunchtime but then shooting way up into the high 200's late in the day- except when she has marching band in which case she's staying steady and then tanking overnight. We will not discuss what the weekend numbers look like with an ever-changing band/homework/fun/sleep schedule.

Every year kids face challenges going back to school, diabetes-related or otherwise. They come home and tell their parents, who provide any number of phrases to soothe them: This too shall pass. What doesn't kill you makes you stronger. Life's too short to worry about that. Just do your best. And so we'll continue to apply these same pithy phrases to our approach to managing the back-to-school diabetes adjustment. We'll do our best, making tweaks every couple of days, trying not to worry, knowing that we will get through this, stronger in the end, as we always do.





Endo Eclipse Day

A note: School has begun. A semblance of 'routine' is beginning to appear. The opportunity to dust off a couple of posts I began over the summer and never published has arrived. So, yes, you'll see a couple of stories here which might make you think you've time travelled. But eventually we'll be all caught up!

We were not in the 'path of totality,' but a partial eclipse is unusual too, so we were excited to experience it.

But there was a glitch. The peak of the eclipse in our area was expected around 2:45 and we had an endo appointment at 3. In a city a 30-45 minute drive from home. That ruled out the local library's eclipse event, and a few other cool viewing options. Instead, equipped with our homemade cereal box eclipse viewer, we arrived at our doctor's office building about 2:15.

Out on a busy city sidewalk, we watched the shadows in our cereal box slowly change. The light grew dimmer and weirder. Some people near us had eclipse glasses, some had viewers clearly made at the last minute out of office supply boxes. Some were taking pictures with their cell phones while debating whether it was safe to do so. There were a few familiar faces from the diabetes center, including our endo who was entering the building as we arrived. People from throughout the neighborhood and from all walks of life had seemingly abandoned their work to converge on the streets. While it certainly wasn't the viewing opportunity we would have chosen, watching it in a large and diverse sea of people was fascinating, fun and memorable.

"Doing some eclipse viewing, were we?" asked the doctor when we settled into his office chairs.

"Yup- why not?" I replied.

"Why not, indeed," he said.

We could have bailed on the eclipse viewing because of diabetes. Just like we could have bailed on countless other opportunities over the past 14 years. But we chose to find a way to make it work.

Why not?

Glucagon Training


A couple of weeks before my daughter went on the five night youth group trip I met with the chaperones to train them in glucagon use, and to talk about diabetes concerns for the trip. These are people I know well, which has a great deal to do with why my daughter went on this trip without a parent in the first place. They were eager to learn how to help my daughter have a successful first trip away, and how to react should an emergency arise.

We gathered at a table.

"Epi pens make me a little nervous," my first chaperone friend said.

"Well, wait until you see this thing," I replied with a wry smile.

He was, indeed, humbled by the sight of the glucagon kit.

"Here's the deal," I said once it was open in front of us on the table, "We've never needed to use this. We've never come close to needing to use this. You guys know her. She's responsible about her diabetes and she's self-aware. She's got the continuous glucose monitor which alarms when her blood sugar goes low. But because diabetes can be unpredictable, there's an infinitesimal chance you'll need this, so it's important to us that you know how to use it. And besides, once you see this, I'm certain you'll listen even more carefully to the rest of the ways I'd like you to look out for her." Cautious smiles had returned.

I walked them through step by step with an expired kit, and then one chaperone physically set up my second expired kit while the other gave verbal directions. They seemed to get the gist, and learned to look for the pictographs inside the packaging for clues. In the end, I reminded them that the first step would be to call 911 and that if they were flummoxed by the kit, the fact that they knew what it was and where it was would be key for the EMS workers.

After striking a healthy fear of glucagon into their hearts, we went over the very simple things a 15 year old kid who's out of her element might need their help with in order to avoid disastrous low blood sugar:

-Someone to hang back with her if she needs to wait out a low.
-Someone to ask her if she's okay if she's spacey or uncharacteristically emotional, which are the primary signs of low blood sugar for her.
-Someone to stand up for her if someone gives her a hard time about stepping aside when she should be doing her volunteer job, or eating when she "shouldn't be," or looking at an electronic device when the kids have been told not to.
-Someone to get up and nudge her if a dexcom alarm is going off in the middle of the night.
-Help getting supplies should she somehow blow through the snacks, juice and glucose tabs we packed.
-Support if (when?) diabetes causes missed opportunities or unpleasant experiences along the way.

In the end they didn't use the glucagon. In the end, it may not have been necessary to show them how to use it at all. But in the end the glucagon training led to a much more important conversation about ways to keep her safe. Which made all of us more comfortable.

The Trip I Never Thought Could Happen


My daughter is currently in a city 4 hours from here without a parent.

This is it: the moment I thought would never come.  No way. No how. She would NEVER grow up. At least not diabetes-wise.

I'm stunned that it's happening and even more stunned that I'm completely okay with it.

I was welcome to go on this trip- a service trip with the church's youth group. But this seemed, for several reasons, like the ideal opportunity for her to spread her wings.

Why now?

-She's as ready as she'll ever be. She proves it every day. She especially proved it on the high school's spring music department trip which I, of my own free will, volunteered to chaperone so that I could be there 'just in case.' There was no 'just in case.' She did it all by herself while I shared a room with a (as it turned out, perfectly nice) stranger and worried endlessly about the whereabouts and safety of the rest of the kids.

-This trip is relatively close, just a four hour drive should I need to get there. And it's in the middle of a major city so there are hospitals, ambulances and pharmacies readily available should she need them.

-It's a small group: 6 kids and 2 adults. One of the kids is one of my daughter's closest friends. These kids genuinely like and care about each other. The chaperone to kid ratio is pretty great too.

-Speaking of chaperones, if I had to pick two people to send my kid away with for the first time, these two adults would be at the top of my list. Their willingness to take this on was, of course, one of the essential criteria. They're also responsible, concerned, and willing to learn everything necessary to support my daughter. And, probably most importantly, my daughter trusts them and likes them and will therefore include them in any issues she's having- diabetes-wise, and otherwise too.

-Lastly, and probably most importantly, my daughter was willing to go without me. That's been the bottom line for every big step towards diabetes independence we've made thus far. This decision was no different.

So far so good, considering the fact that diabetes does not travel well. One HIGH with double up arrows on the Dexcom required an emergency site change. An 82 at bedtime required some thinking about what to eat in order to make it until morning (a cherry Nutrigrain bar with no insulin- and yes, she made to morning). Otherwise she's guessing carbs as well as I could, remembering to carry her sack of dia-stuff, and keeping an eye on the Dexcom. I'm grateful to have the Dexcom share so I can check in when I'm worried, but I'm checking less than I thought I might.

Meanwhile she's having a huge adventure, both with the volunteer projects they're doing and with the sightseeing opportunities they're squeezing in whenever they can.

It's hard to wrap my head around how we got from a teeny, tiny person with diabetes who was totally dependent on me for every aspect of her care to this particular moment. It wasn't one giant step. It was a million teeny, tiny steps and suddenly, stunningly, here I sit over 200 miles away. And, inexplicably, I'm really pretty okay with it.

Look at That!


"The lady with the Omnipod is still at the pool with her kids most days," my daughter reported the other night.

"And there was another woman there. She had a pump clipped to her bikini top but the tubing was connected to her hip.  It would make sense if the site was in her arm maybe. It looked uncomfortable to me.  Or like you could accidentally yank it out with your own arm somehow- but whatever I guess...it's up to her."

It's summer again, which is prime pump-sighting season, especially at the pool and the beach.

Last years' beach vacation tally was 2 dexcoms and an Omnipod.  Our town pool tally was 2 omnipods and a tubed pump a little too far way to identify the brand of.  Walking around various cities and towns added 3 more pumps that I can remember. 

We've never spoken to any of these people about their devices.

But we always speak to each other about them. "That guy has something on his stomach...over there by the purple striped umbrella...is it a Dexcom or an Omnipod?" Or "That lady's making me nervous standing knee deep in the water- over there near the jetty- I think that's a Medtronic pump, right- those aren't waterproof are they? The tide's coming in fast." We discuss where the devices are worn, attempts to disguise them or not, and how far down the beach the people with diabetes walk without bringing a meter or a container of glucose tabs with them.

It's fascinating to watch other people with diabetes in the wild. It's also comforting since every sighting-spurred conversation boils down to this: "Hey- look- there's another person with diabetes just living life," and especially at the beach or the pool, "and having fun."

In Other People's Hands


I met a woman the other day who was an occasional substitute nurse at the middle school.  While this was the first time we'd met, she knew my daughter well.  There are others like her.

I have sent my child to school, on field trips, to birthday parties, to marching band camp and more.  The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.

I wonder if the people in whose hands I've left her fully understand how I feel about them.

These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.

If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.

Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.

Upper Hand


Last week, diabetes had the upper hand. It issued a series of decrees.

They included:

*Alarms will sound nightly from midnight until four a.m.

*You will wake a sleeping teenager for Cookie Monster Juice at least twice per night.

*Delirium will lead you to wonder if the nightly need for multiple juice boxes has something to do with the Cookie Monster themed branding. As in, 'Me Want More JUICEEE.'

*You will wake each morning to say, or to hear your child say, "Uck- juice box breath again. This is so gross."

*You will become so exhausted by overnight low blood sugars that you will increasingly limit dinner and bedtime boluses until the alarms turn from low to high, though still reliably from 12-4.

*You will try multiple tactics to stabilize overnight numbers and each will backfire more mysteriously than the next.

Diabetes, I have news for you. You don't get to win.

We issued only the only decree we need:

*We will not give up.

With perseverance and patience the trend is abating as mysteriously as it appeared. Maybe we finally made the right basal adjustments. Maybe we fixed the bolus dosing for the evening hours.

Or maybe it's all because we switched back to Juicy Juice boxes.

Unsolicited Advice- We Are Not Alone


I thought armchair medical quarterbacking might be a unique diabetes phenomenon. People who live with diabetes often hear these kinds of things:

That new pump with automatic shut-off sounds like something everyone should have- when are you getting one?

I can't believe you let her go to the carnival without an adult- that seems so risky.

My coworker with diabetes completely eliminated carbs and she's doing great! You should try that.

My nephew never had a 504 plan and he graduated high school with straight A's and a 1300 on his SAT's. Why would you have one for your daughter?

I happen to be spending time with a few different people these days who have medical conditions other than diabetes. I'm learning that we diabetes people are not alone. The free dispensing of unsolicited advice crosses many disease platforms. I've heard 'suggestions' like:

I never went to a doctor for my rotator cuff issue- my chiropractor is amazing. Alternative medicine is the only way to go.

My cousin had that kind of cancer and never considered new or experimental treatments. It seems really risky.

Dad wouldn't have put up with the pain long enough to try physical therapy and pain management for his back issue. He went straight for surgery. I can't believe you're going through all of that.

There's a catch-phrase in the diabetes community: Your Diabetes May Vary (YDMV). In many ways it applies to other physical conditions too. There are so many reasons (more than this short list) that different treatments and lifestyles work better for different people with the same diagnosis:

-First of all, the diagnosis might not be quite the same at all...type 1 vs. type 2, different kinds of back injuries, different kinds and stages of cancer.

-A condition can physiologically manifest itself differently in a different body.

-Insurance coverage and ability to pay can influence medical choices.

-Education and prior life experiences influence decisions people make about treatment.

-Quality of life has a different meaning for everyone, leading to different tactics for managing a health condition while living a full life.

I think it's okay, if not downright helpful, to talk to each other about the different ways we manage diseases. We can certainly learn from one another, and it's often useful to hear and to try new ideas. What's not helpful is insert assumptions or judgements into the conversation. It's important to respect and support the decisions people make, even if they're different than yours. What works for one may not work for another.

At least, diabetes friends, we're not alone. It turns out that Your Disease, Discomfort, Distress, or Dietary Restriction May (Also) Vary. And that people have opinions about all of them.




Growing Things


Diabetes Blog Week



Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)  For more 'more than diabetes stories,' click here!

 
I like to collect plants.
 
Not fancy plants, and definitely not fussy plants which need any real attention.
 
I like plants with a little history, plants which remind me of people or places that are special to me.
 
Here are a few things which happen to be growing or blooming in my yard today:



The first rosebud of the year.
The bush was in full bloom in the front garden of the house when we moved in.
I love that we see the roses through the living room window.


Lily of the Valley transplanted from my childhood home's garden




The mint in the back is from plants which grew at the farm where my grandmother grew up,
divided and transplanted in several locations since then.

The rosemary in the foreground is a plant which lived over from last year- not as much a history story as a gardening win!



We went to a local public garden's plant sale the first year we lived in our house.
I purchased a small bleeding heart plant, divided from one on the garden's grounds.
It's now threatening to take over the corner of my yard.


These Japanese iris, also in the front garden, came from my husband's
childhood home.



An Hour's Worth of Emotions


Diabetes Blog Week



Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I present to you the story of the events of Monday morning, with words describing our wide-ranging emotions about said events highlighted in bold print:

On Monday, my kid arrived at school anxious- not about the first day of standardized testing, but about which teacher had been chosen to proctor her private testing room. Her 504 plan has accommodations allowing her to stop and restart testing to deal with any diabetes issues, so she is separated from other kids since her test might be timed differently than that of others. "It's so awkward, mom, I hope it's a teacher I know at least." She checked the list posted in the school lobby and was confused. She had, inexplicably, been assigned to a room with a large group of special education kids. The texts to me began...

"Help! What do I do?"

"Go to guidance and explain that you've been told you were testing alone."

We texted back and forth for 25 minutes or so while she sat in the guidance office. People came in and out asking her questions and then disappearing for stretches of time. All of the teachers not assigned to a testing room were summoned to the principal's office via the PA system. She eventually stopped answering my texts at which point I assumed the situation had been resolved and that she had started taking the test somewhere- with someone.

Scrolling back through those texts, the words and emojis described the following emotions:

Surprise
Anger
Confusion
Frustration
Boredom
Impatience
Sadness
Anxiety
Loneliness
Aggravation
Annoyance
Hope
Disbelief
Stress

Those were interspersed, because how else were we going to cope, with

Amusement and
Laughter



In the end she was relieved that it got resolved, and amazed that the stress hadn't spiked her blood sugar. We were surprised that the rules required 2 teachers to be in the room with her and thankful that they were two teachers she knew and liked. They helped her settle in well and she feels confident about how she did on the day's tests.

In the end, I was proud of her for handling the situation herself and happy that technology allowed me to support her via text.

I would be embarrassed, however, if school officials discovered the number of circus-themed emojis I sent over the course of the morning.

While this story highlights in a somewhat lighthearted way how diabetes can lead to a wide range of emotions in just an hour of every day life, the possibility of long-term serious mental health issues is real. Depression, burnout, anxiety and other mental health issues impact most people with diabetes and their caregivers at one time or another. To read other perspectives on this topic, click here.

Lost in the Dark


Diabetes Blog Week



I chose the 'wildcard' option for my Diabetes Blog Week day 3 post:

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong.  But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny!  Go ahead and share your Diabetes Blooper - your “I can’t believe I did that" moment - your big “D-oh” - and let’s all have a good laugh together!!

Okay- a caveat- this one was stressful for my daughter. But because I didn't hear about it until everything was resolved, I'm able to laugh about it:

She boarded the dark roller coaster and discovered the seat was cramped. Before using the safety harness, she decided she'd be more comfortable if she removed her Dexcom receiver which was clipped to her waistband. She stashed the receiver in her string backpack and put the bag in the pouch area in front of her.

The ride was scarier than she'd hoped. She got off, grabbed her bag, and quickly headed for the exit.

Once outside, she opened her bag to grab the Dexcom. It wasn't at the top where she'd put it. She frantically removed every item from the bag. It wasn't in there. She had her friends double-check. No Dexi.

She approached the attendant at the ride entrance. "I lost my medical device on the ride."

She described the device, an electronic item in a black case with a belt clip. She answered questions about which seat she'd been in and how long ago she rode.

The attendant checked his station first since all lost and found items ultimately ended up there. He didn't have it. He called the person at the stand next to the ride, where any lost items would be turned in by riders who found them in their cars, and was told it wasn't there either.

"We may have to shut down the ride and turn on all the lights if it doesn't show up."

My daughter was horrified. Her mistake could potentially shut down one of the most popular rides at the amusement park.

"We'll wait a few more minutes and see if anyone turns it in."

At that point, it was time for the ride attendants to rotate stations or take their breaks. The guy helping my daughter left and was replaced by the person who had been at the stand next to the ride.

"Describe it to me again?" he asked.

She did.

"OH ...  Yup. I have it. I thought it was an I-Pod."

It was a scary 15 minutes.

Lessons were learned about securing valuable items.

Ultimately everybody lived happily ever after, and now we can laugh about it.

Want to read more stories about 'Diabetes Oops Moments?' Click here!

Getting Our Money's Worth


Diabetes Blog Week


It's Day 2 of Diabetes Blog Week! Today's topic is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I'm grateful that our family is able to secure what most in this country would consider 'good' health insurance through an employer and that we're able to afford what are still extraordinarily expensive premiums, deductibles and copays. There are so many people who are unable to afford care which would allow them to live...let alone live well...with diabetes. Having access to quality diabetes care is not, in this country, in this day and age, something to take for granted. Instead, both because it's not guaranteed and because we pay dearly for it is, for us, a precious resource which should be used wisely in lots of ways, including these:

We prepare well for, and take full advantage of visits to the endocrinologist. Our copay to visit a specialist is $50- no small price.  We choose our specialists carefully, and if we're not happy we don't go back, just like we wouldn't return to a restaurant that served a sub-par $50 meal. Fortunately, after some trial and error, we found a great endo years ago. In the days leading up to the appointment, we talk as a family about what problems we're hoping to get solutions to and what questions we need answered. Once we're there, we give the 20-30 minute conversation all of our energy and focus. We take notes, and when we get home we implement the suggestions.

We also choose and purchase our diabetes equipment carefully. We pay a 20-30% copay for pump and CGM supplies. So we do our homework there too, extensively researching options. Then we talk with the doctor to choose the best insulin delivery and glucose monitoring methods for my child's particular needs. Over the course of many years I have managed to stockpile some extra pump and CGM supplies in case there is a lapse in our insurance or in our ability to pay that 20-30% copay.

We find opportunities to save money on supplies when it's reasonable to do so. We recently had the choice whether to pay full price for Lantus to keep in the fridge- and hopefully never use- for pump failure, or to receive a different long-acting insulin for no copay at all. That was a no brainer. We chose last year to stick with the longer-lasting transmitters and sensors of the Dexcom G4 instead of upgrading to the G5 which would cost us more in maintenance supplies. On a much smaller scale, I stock up during juice box sales and buy out the Smarties post-Halloween.

Despite the alarming annual tally of medical costs I compile each year for the income tax file, we are among the fortunate ones. Those costs don't preclude our ability to pay for housing, groceries, or even annual family vacations. So when there are unneeded supplies in the closet, or a charitable organization to support, we try to help those who are unable to afford the costs of diabetes. We've donated test strips and meters to Insulin for Life. We participate in an annual JDRF walk. We share information on social media about local organizations willing to take and redistribute unexpired diabetes supplies. We write letters and make phone calls to government representatives, insurance companies, and medical companies.

We do what we can to use our resources wisely and to help and advocate for those who don't have adequate resources to use.

More Diabetes Blog Week posts on the cost of diabetes can be found by clicking here.




Stuff Happens


Diabetes Blog Week


 
Today's the first day of Diabetes Blog Week! (!!!)

Today's topic is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?
 
I try to maintain a family-friendly blog here, so I'll put it this way: Diabetes stuff happens. Like sitting down to lunch only to discover there's only a unit of insulin left in the pump. Or being so low all day that you run out of glucose tabs. Or discovering the meter battery is dead while you're on a sleepover. The stuff is not always preventable. So we try to be prepared for as many eventualities as possible.
 
At home or at school there are plenty of supplies to address any diabetes disaster. When we're out but close to home I can run over to a friend's house with a battery or we can stop home between errands for a new infusion set if we need to.
 
But sometimes we travel further afield. For day trips, excursions while on vacation and school field trips, we throw this Ziploc bag (or a facsimile thereof from school) in the backpack:


 
THE CONTENTS INCLUDE:
A spare vial of test strips
Spare batteries for both the meter and the pump
Glucagon (even though there's usually one in my purse)
The current open vial of insulin
Long-acting insulin for pump failure - at least if we'll be more than an hour or so away
A couple of syringes
Everything needed for a site change including 2 insertion sets
Dexcom tape
Extra glucose tabs
 
 

If it's hot, we put the contents in this insulated zipper bag.
 
It's a lot to carry around. We usually also carry extra juice boxes and water. But it beats the possibility of having to return home (or to our home away from home) if the infusion set rips out, or the pump battery dies, or somebody accidentally dumps all the test strips on the ground.
 
Nobody ever said having diabetes was predictable. Stuff happens. That stuff is less likely to stop us if we're prepared for it.

Want to read more posts about the Unexpected? Click here!
 


The Insulin is Insulin Conversations


At last month's endo appointment we needed just one prescription: Lantus to have on hand in case of pump failure.  Our doctor sent the Lantus prescription directly to our local CVS through the diabetes center's online ordering system, just as he's done every time our emergency vial has expired.

By the time we got home there was a voice mail from a pharmacist. The Lantus was no longer covered by our insurance. I needed to return the call to talk about next steps.

When I called back, a pharmacist walked me through possible substitutions. I explained that I wasn't terribly picky as long as there was something in the fridge which would keep my kid alive for a day or two until a new pump arrived. We decided that whatever the doctor ordered to substitute would be fine with me and that if there were choices I'd take the one with the lowest copay.

We left for spring break the next day expecting a voice mail upon our return telling us that the prescription was ready for pickup. There wasn't one, so I called.

"Yes- I see that the Lantus wasn't covered but that the Novalog was picked up as a substitution."

"Um...no. The Novalog was a different prescription which we refilled around the same time. Novalog isn't a substitution for Lantus- they're different kinds of insulin. The pharmacist I spoke to was going to call the doctor to request an appropriate substitute."

"Oh- I'll give the message to the pharmacist so that he can call later today."

Two days later, still having received no notification that the prescription was ready, I called to follow up.

"Yes I see that the Lantus wasn't covered, but the Novalog was the substitute for the Lantus, right?"

"No. It wasn't. And also, that's not possible. They do different things."

Again, "I'll have the pharmacist call the doctor's office."

I responded with something only slightly nicer than, "Don't make me have to call you again."

Two days later I called again and was transferred to the actual pharmacist.

"We've been calling the doctor since yesterday afternoon and haven't been able to reach anyone."

"It's a huge clinic, not a private practice. That seems highly unusual."

"Yes, but it just rings and rings."

We verified that they had the correct number, which they did, and then the pharmacist asked if I would call instead.

So I did. I called the office, where I was quickly connected to someone who answers the 'prescription line.'

I recited my tale of woe and provided the necessary details about the pharmacy.

An hour or so later I received a call back from the diabetes center.

"Hi- I'm calling you back about the Lantus. You have the Novalog, right?"

"Yes- that's not the problem."

"So then what is it that you need?"

"An alternative for the Lantus."

"But you have the Novalog."

"Yes- and they're two different things...right?" I was right ... wasn't I? 

"We have the Novalog which is in my daughter's pump- the fast acting insulin she uses 24/7. Then we keep Lantus, the 24 hour insulin, on hand in case the pump fails."

"Well...yes. I don't know what the pharmacist was saying then. Let me call him back."

An hour or so later the woman from our doctor's office called back and said that doctor's orders for Basaglar insulin had been sent over to our CVS. I received confirmation of this new order through the office's online patient portal.

Another weekend passed with no news from CVS, so on Monday I called and inquired about the status of my daughter's Basaglar insulin order.

"Yes. We are working on that."

"You're working on it?"

"Yes. Well. Let me see if we have that in stock." There was a brief interlude of top volume static-y piano music and then, "Yes. I have it here. We will have it for you this afternoon."

And, believe it or not, they did. Except it was in the form of pens, which we've never used.





 
 
So now I have to call to get insulin pen needles.
 
Meanwhile, a quick google search tells me that if push comes to shove I can draw the insulin out of the pen with a regular syringe. Which is reassuring, since who knows how long the next step will take.
 
 

The Trip


I chaperoned a five day, four night, 120 kid high school field trip last month.

While there was a school nurse traveling with the group, and while my kid does most of her diabetes management alone at this point, I wasn't completely comfortable letting her take this trip on her own. And, perhaps more importantly, she didn't feel completely comfortable either. Our concerns included:

-The farthest my kid has ever travelled for a sleepover is 5 blocks from home. She's never been away for more than about 18 hours. Going from that level of overnight diabetes self-care to a 4 night trip over a thousand miles from home felt to both of us like way too big of a leap.

-The trip involved air travel.  My arrival for an emergency (gastrointestinal illness, first-ever glucagon use, other unforeseeable situation) would be both significantly delayed and extraordinarily expensive. Also, while I'm sure someone could have walked her through airport security, the TSA checkpoint is a minefield for people with diabetes and we were concerned about her potential need for a strong advocate should she get pulled aside.

-The trip involved five days of dining out. My daughter has never managed more than two restaurant meals in a row on her own and was nervous about not having someone there to eyeball the carb counts with her and/or help her pick up the pieces after a bad guess.

-The trip's itinerary was intense. And the itinerary didn't lie. My Fitbit tells me I walked 10 miles a day with lots of 'active' time. We rose by 6:30, earlier some days, and the kids were not required to be in their rooms until 11 p.m. There were regular transitions from place to place with few moments to stop and regroup. Amusement park rides, swimming pools, and several performances including marching in a parade were all on the agenda. We were concerned that the level of activity combined with the lack of time to stop and think about diabetes could lead to problems significant enough to slow my kid down or derail her participation. It felt important to have someone there both to remind and support her as she took the time to care for her diabetes, and to stay behind with her should she need to stop and wait out a low or trouble-shoot a high.

We decided that sending her on this trip without a parent was too much to ask of my child, the nurse, and the staff. Also, spending 5 days flipping between the Dexcom app and the 'Find My Friends' app on my phone while simultaneously trying to remember to breathe didn't really appeal. After a couple of conversations with the teacher in charge of the trip I was, despite a certain level of anxiety about chaperoning a group of high school kids, grateful to be given the opportunity to go.

On the trip I performed a variety of general chaperone duties, got to know some great kids and adults, and got to be part of a unique adventure. As far as my mom-of-a-kid-with-diabetes role, I mostly watched from a safe distance while my kid did her own thing. She talked to the TSA people on her own. She kept the Dexcom with her overnight and woke to respond to its alarms. She did her own site change in her hotel room. She counted her own carbs, asked questions at restaurants, and, on more than one occasion, sent back sweetened iced tea for the unsweetened she'd ordered. She made decisions about dosing and snacking based on her activity level. She carried her own supplies. Her blood sugars weren't perfect, but given the food and schedule they were good enough. She spent the days with her friends and I spent them with the other chaperones.

As it turned out my presence was more of a convenience than a necessity. I provided some in-line coaching and moral support as we went through airport security. I handed her extra water to combat the effect of heat on her blood sugars. I helped her with an unanticipated Dexcom sensor change when the one we put in the day before the trip inexplicably conked out. I met her at a water flume ride to hold her diabetes stuff so it didn't get soaked. I carried the glucagon, a spare infusion set and some extra glucose tabs, always close enough to jump in to assist if needed. When the large group divided and headed to different destinations I stuck with my kid, making the division of chaperones a non-issue. My presence allowed the nurse traveling with us to focus on other kids without worrying about keeping track of mine.

But now that I've seen how well she handled most everything without my help, I'm excited for her to have an opportunity to travel without me. Just maybe on a trip that's a little closer, and a little slower-paced.


Bolus-worthy Bunny



 
 
 
 
As my daughter looked through her Easter basket yesterday she remarked,
 
"My friends all get chocolate bunnies from CVS. I'm glad mine is always homemade dark chocolate. It makes it so much more worth eating it."
 
The Easter Bunny's reasoning (as far as I understand it, though we've never met) is that if your basket is not going to be filled to the brim with candy, the candy that's in there should be worth eating... 'bolus-worthy' as it were.
 
So nestled among a few silly Easter toys, a package of baseball cards, a couple of  EOS products, an i-tunes gift card and some marigold seeds there's always a really good chocolate rabbit the Easter Bunny has picked up at a local candy store.
 



What We Know


My daughter got a new pump a couple of weeks ago. It's her fourth Animas pump.

We know there are other options out there. The new Medtronic pump with it's built-in glucose-responsive CGM technology is by far the closest to the ultimate goal of a closed-loop system. The slim and durable Tandem has some nice user-friendly touchscreen and Bluetooth features. The tubeless Omnipod would be convenient with exercise clothes and on the beach.

We briefly considered all of the options.

In the end we decided not to undertake the challenge of learning to use a whole new insulin delivery system. We decided to stick with what we know.

 
My daughter has been attached to an Animas pump since fall 2004, 24 hours a day, seven days a week. It's as close to a part of her body as an electronic device can be. Replacing it with a new brand of pump would, we think, require an extraordinary amount of learning, thinking and adjustment. Which seems unnecessary since we're perfectly happy with the results we've had.
 
We use several of Animas' unique features to our advantage. My kid has very low basal rates during certain parts of the day, so the tiny basal adjustment increments the pump offers are great for really fine-tuning her doses. The meter remote is a huge quality-of-life feature because it allows my daughter to program a bolus without extracting her pump from underneath a dress or a marching band uniform.  We have a good feel for the current insulin-on-board set-up, and for how the bolus calculator takes her blood sugar into account so that we can easily factor that knowledge into dosing decisions. We've rarely had problems with our pumps but when we have, we've consistently had good experiences with Animas' customer service department. After 12 years of the same pump I'm able to do site changes, battery swaps, and cartridge changes under almost any circumstances. My kid can program a bolus and have a conversation or keep an eye on the baseball game at the same time. Using this pump has become second nature.
 
In four years, or maybe sooner, our decision making process may be different. There could be some amazing new technology on the market by then, like an honest-to-goodness artificial pancreas or at least something much, much closer than the current options. For that we would certainly switch brands and learn something completely new. Until then we'll stick with what we know.

Endo Day


As I started to write about yesterday's endocrinologist visit the words felt familiar. I looked back and found a post (which you can read below) from 2013. The only difference between the old story and yesterday's visit was the added visual aid of a Dexcom graph which showed that the average range of blood sugars was about 40 points higher than we'd like it to be. "This whole graph just needs to move down an inch or two," was our doctor's assessment of the issue. The rest of the conversation was about the same as this one four years ago:

We visited the endocrinologist this week. 

In the weeks leading up to a visit, I am usually motivated to keep a more detailed log and to scan through the meter's averages and graphs.  I try to identify any major issues we need to discuss.   Sometimes I am able to fix a few things or at least narrow down the issues to a few really tricky ones.  I do this so that we can spend our endocrinologist time on issues I really need help with.

This time I tried to think about it.  I really tried to weed through all of those numbers and find the places we needed to change things.  I didn't know where to begin.  I gave up.  It turns out my confusion was warranted. The doctor's initial impression?

"She needs more insulin...like most of the day."

Her A1C was up, only by .3, but after going down a couple of times in a row it wasn't great news.  It wasn't surprising either.

Many things had changed since our last visit.  She'd added height.  She'd added weight. Yet she was missing a sufficient quantity of a key ingredient.

So we added insulin to almost every basal rate.  We added insulin to almost every carb ratio.  We added insulin to the correction factor.

We've been doing diabetes for ten and a half years.  I'm able to tweak a basal rate here and there, or recognize when the correction factor is no longer correcting.   I'm a person who, given sufficient knowledge, tries to solve problems on my own before asking for help.

Yet once in a while, particularly with a growing child with diabetes, the time comes for a major overhaul. In many ways, it was freeing to hand that whole pile of 'undesirable' numbers over to the endo and say, 'please fix this.'   Now we'll watch and see if he did, and hope he at least got close enough that I can trouble-shoot the rest from there.

I don't imagine all of yesterday's adjustments will work perfectly. We'll be following up with more tweaking in the weeks to come. But I'm grateful for yesterday's major overhaul so that we can get back on track, an inch or two lower on that Dexcom graph.