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.



Different Every Time


Airport security experiences are like snowflakes- they're different every time. Fortunately this week's travel was different in a good way.

Our journey began at a huge, busy international airport.

My daughter's boarding pass was marked pre-check. The procedure was shoes on, metal detector only. She approached metal detector and said to the TSA agent, "I'm wearing an insulin pump which could set this off."

"Try it," the agent replied.

My kid walked through metal detector, and did not set it off. She looked at the agent who gave a friendly wave. "Have a good trip!"

On the way home, at a smaller airport, the procedure was different:

Our boarding passes were, once again,  marked pre-check. Upon arrival at the first security checkpoint we were informed that because the boarding passes were printed at the hotel and not on site at the airport, the authorization was not valid and would not scan in their system. We were ushered to the full security, shoes-off, body scanner line.

My kid approached the body scanner with her disconnected insulin pump in hand. "This is my insulin pump. It can't go through the luggage x-ray or the body scanner. It needs to be visually inspected."

She was instructed to hand it to the agent behind the luggage scanner. As she did so, she reiterated that it could not go through the luggage scanner. He smiled and nodded, and seemed familiar with the issue. "Yup- I'll meet you on the other side."


The agent walked away with the pump (a little unsettling) and my daughter went through the scanner. The pump was handed back on the other side, as promised, and we continued on our way.

A couple of notes on our experience:

-On past trips I've been the person to speak to the TSA people, but I asked my daughter before we left if she'd be willing to be her own spokesperson through security. Eventually an opportunity may come for her to fly without me and I want her to be comfortable with the process. We talked quite a bit ahead of time about what could happen and how she would respond. She handled both experiences well.

-We're often tempted not to mention the insulin pump and just go through the metal detector hoping for the best. We certainly do that at museums and other more minor security checkpoints. But for some reason the pump occasionally does set off the metal detector. Also, because my daughter is on the smaller side, the pump is always visible in her pocket or on her waist band so it's immediately obvious that she hasn't followed the instructions to empty her pockets. For those reasons, when we're at TSA security or touring a highly secure location like a government building, we've always mentioned the pump first with the goal of heading off suspicion before it can begin.

-People make a variety of choices about going through the full body scanners and about putting their pumps through the luggage scanners. Some leave the pump on and opt for a pat-down, after telling the TSA agent that they want to avoid the body scanner altogether. Some send the pump through the luggage scanner and hope for the best despite many pump manufacturers' recommendations to the contrary. Some wear pumps through the body scanner, which is also not recommended for my daughter's brand of pump. To us the option of asking for it to be visually inspected seemed like the safest, easiest, least intrusive, and most efficient solution.

We don't fly often, but thus far we've had no two TSA experiences which were alike diabetes-wise. Sometimes the carry-on's contents have been called into question. Sometimes she's patted down despite the insulin pump being the obvious reason for the metal detector alarm. This week's TSA experiences were our smoothest ever. Maybe we've finally hit the sweet spot on the security learning curve. Maybe the voices, including my own, of people who've been reaching out to the TSA requesting common-sense security measures for people with diabetes are finally being heard. Or maybe the TSA is finally realizing there are more important things to worry about than a 15 year old girl with an insulin pump.



New and Sparkly



We fired up my daughter's new insulin pump over the weekend.

Our four year warranty was up and, while the pump still worked, its appearance led us to believe it might be living on borrowed time:





The screen protector was peeling off.

And so was the paint.

It was still effectively giving insulin, but the idea of having no warranty was making us nervous.










We've had very few issues with Animas pumps over the past 12 years, but when we have, having one under warranty has unfailingly led to an overnight replacement.

That's hugely reassuring, especially considering how long it took to order a new one from scratch.






Granted this wasn't an emergency since my daughter's pump was still perfectly operational, but it took about six weeks between my first call to inquire about a replacement and its arrival on our doorstep. The process began with two different phone calls with questions for me, then doctor's orders, insurance authorization (which was the longest process), another phone call to discuss our copayment and the shipping details, and then actually getting it shipped out.

The possibility of reverting to multiple daily injections for even a fraction of that time is not appealing to us.

The new pump is silver, and sparkly all over, with no chipped paint. The screen protector is intact and clean.


And we expect to have a reliable source of insulin delivery for four more years.

 


 

Reading is Fundamental


My daughter had a few late afternoon and evening lows last week.

When she's out and about, she carries juice boxes, glucose tabs and smarties. When she's home she prefers something different. There are occasional seasonal choices in the fridge like fresh apple cider or high-test lemonade leftover from a cookout. Usually, though, the home juice of choice is orange juice. She pours four ounces into her pink sippy cup and waits for the low to turn around. Nine times out of ten, unless she's under 50 or been exercising heavily, those 4 ounces bring the low up within 15 minutes and life goes on.



Last week, not so much. The lows seemed slower to respond. If it was dinner time and she hit 70 after 15 minutes, we'd eat and subtract some bolus insulin. Otherwise, she found herself adding more juice, or a little snack of fruit or crackers to make sure she came all the way up.

A couple of seemingly sticky lows in one week was weird. And a nuisance, especially at dinner time. What was going on? Maybe it had to do with impending full moon or some other such mysterious and passing variable. Or maybe something had changed and my daughter's new normal involved closer to 20 carbs per low.

Then I walked into the kitchen as she poured the last of the orange juice into her cup:


I accidentally bought low-carb orange juice. I don't drink it and my husband hadn't noticed when he slugged it down still half asleep in the mornings.

I read a lot of labels: cereals, snacks, bread, starches and countless other packages are fully assessed before they're consumed. I missed this one. Which explains why those lows wouldn't come up.





No Diabetes In There


Yesterday was the dreaded eye doctor day. Dreaded for several reasons:

   -Making time for any appointment is a challenge with the busy high school schedule.

   -Most of the homework had to be finished prior to the appointment since she expected to be blurry afterwards.

   -While we truly appreciate the thorough exam and attention to detail we receive at this office, we've learned that an appointment there is an hour and a half commitment.

   -And, of course, the diabetes what-ifs.

The plus, in addition to liking this doctor, is that the office is less than a mile from home. So a few minutes before five we hopped in the car with the last of the homework in hand. We arrived, signed in, and took our seats in the waiting room. After half an hour of reading for history class and watching a series of increasingly unsettling segments on the 5:00 news (Car crash! Bomb scare! Everything could kill you!) we were ushered into the exam room.

The doctor started with the basic vision tests, which came out about the same as last time. My daughter has 20/20 vision in one eye, which she apparently uses to compensate for astigmatism in the other. No glasses yet but probably some day. Then there were the eye drops- which she hates but which she took like a champ.

Next up was the visual field test. Our doc usually gives this once, as a baseline in kids. But because having diabetes isn't enough of an eyeball challenge, my kid also has an 'it's probably nothing but we're going to keep an eye on it' issue going on with her optic nerves. So into the dark room she went to squeeze a clicker every time she saw a light flash in a machine. She did great, just like last time, so we put this concern off for another year.

Round three involved the actual looking into the eye part. The part when the fingers get crossed and the breath gets held. The doctor used a couple of different instruments to look into the eye herself and, after that, took the retinal photograph. She then pronounced,

"They look great- perfect. There's no diabetes in there."

Which is kind of a peculiar way to put it, but the exact words don't matter. My kid, despite still being a kid, has had diabetes for 14 years. That starts to get into the potential collateral damage timeframe.

So far so good. All the ophthalmologist had left to say was, "See you next year."





A New Low





There have been two evening concert band rehearsals this winter, from 6:30-9 p.m. These are intense monthly rehearsals during which the kids are playing challenging music non-stop.

The nights after both of these rehearsals have been multiple juice box affairs.

After 14 years of T1D, we have learned when to expect most lows.

Running, dancing, swimming, and miscalculating the number of carbs in a meal are the causes everyone knowledgeable about diabetes would expect. 

Slow but steady walking, staying up late even if it involves no physical activity, and being sick with a cold all also trigger lows for my kid.

Could playing a wind instrument for an extended period also lead to dropping blood sugar?

The first post- concert band rehearsal low seemed to come completely out of the blue. She hadn't been having any overnight lows at the time, and the rest of the day hadn't involved any unusual food or activity. The only variable I could come up with was the rehearsal. Could the physical exertion of playing her clarinet for that long combined with the mental energy to concentrate on and learn new and difficult music be what led to a 50-something blood sugar so slow to budge? Maybe, I guessed, but since one instance doesn't make a pattern, we chalked up to a mystery low and set the episode aside.

Until it happened again this week. Both times she was at a nice 90-ish number when she came home and had a snack. Then around 1 a.m., she tanked.

Despite using a variety of search terms, my research turned up only one mention of this phenomenon. It's master's thesis from 2006 by Derrick Alan Crow called 'The Effect of Instrumental Rehearsal on Blood Glucose Levels of Five Low Brass Players.'  The link will take you to a several-page preview of the study, which was all I was able to access. His participants, as far as I can tell, did not have diabetes. The blood sugar checks were before, during and immediately after rehearsals, not hours later. But his preliminary background research was interesting and, based on it, he posed some logical hypotheses. His results, while inconclusive mostly due to the small sample, did note some trends of lowering blood sugars during long rehearsals. His theory was that between the mental, aerobic (from breathing), and muscular energy expended by a wind instrument player during a lengthy rehearsal, blood sugar levels drop.

I'd love to see this study repeated in instrumentalists with diabetes. I'd love to see the research include investigating a delayed drop of the sort people with diabetes see with some other kinds of exercise. Clearly, I need to befriend a musical scholar. Or convince my kid to become one.

Meanwhile, we'll plan on covering fewer carbs on concert band nights, and/or setting a temporary basal rate. Or maybe next time this won't happen at all.

Fancy Berry Muffins



What should one do on Valentine's Eve when there is a bag of 'Fancy Grade A Berry Medley' ossifying in the freezer because nobody's been in the mood for a smoothie? 
 
Make some fancy muffins, of course!








You could, of course, chop large unfrozen berries by hand.
This was my quick alternative- just a few pulses did the trick.
I got them a little smaller than I'd intended,
but it worked well for the mini muffins.


Fancy Berry Muffins

3 Tbsp. butter, melted
3 1/2 Tbsp. sugar
1 egg
1 c. white flour
1 c. whole wheat flour
1 Tbsp. baking powder
1/2 tsp. salt
1 c. milk
1 c. berries (fresh or frozen, any variety, chop anything larger than an average blueberry)





1. Combine the butter, sugar and egg in a large bowl. This is the bowl all of the batter will end up in.
2. Sift the flour, baking powder and salt together.
3. Add flour mixture alternately with milk to the butter/sugar/egg bowl, mixing after each addition.
4. Beat well, then stir in berries.






Your batter will be colorful!



5. Fill muffin tins 3/4 full. Use paper liners or grease pan well.
6. Bake at 350 for 15 minutes (mini muffins) or 30 minutes (lg. muffins).

I ended up with 32 mini muffins with approximately 8 total carbs each.


Next time? Some cinnamon sugar on top for color and crunch.

Maybe these would make a nice treat for your Valentine in addition to that rose I'm hoping you've already spared?



The Nervous Nurse


I glanced at the caller ID on my phone, which read  'SCHOOL.' It was my daughter on the line from the nurse's office.

"I was told to call you.  My blood sugar is 77.  I was 60 when I got here 15 minutes ago. I had a juice then and couple of glucose tabs just now. Lunch is in 20 minutes. It's Mrs. X.  She's not sure if I should go back to class. I'm worried about missing the final review and study-guide handout for tomorrow's math quiz."

"Mrs. X is the nervous substitute nurse, right?"

"Yup."

"Put her on. I'll tell her to let you go back to class."

Encounters with nervous nurses are, at best, like the one above. But they have also been known to go like this:

OMG YOU"RE 47!  SIT IN THIS CHAIR AND DON'T MOVE UNTIL YOU'VE CONSUMED ALL OF THE JUICE IN THIS OFFICE. I'M CALLING YOUR MOTHER RIGHT NOW.

Or, WHAT DO YOU MEAN YOU DON'T CHECK KETONES EVERY TIME YOU'RE OVER 200? THAT'S A VERY HIGH BLOOD SUGAR. DO YOU KNOW HOW DANGEROUS THAT IS?

Or, I CAN'T LET YOU {PLAY GYM/TAKE THE TEST/WALK HOME FROM SCHOOL} THIS AFTERNOON. YOU WERE 62 AT 9 A.M. YOU'LL GO LOW AGAIN!

Our full-time nurse for the duration of fourth grade was a nervous nurse.

We spent hours over the course of that school year talking her down from the ledge. With each phone call we explained again that every blip on the blood sugar graph was not a full-blown medical emergency.

We indoctrinated her, slowly but surely, into the idea of addressing diabetes concerns in the moment and then letting that moment pass and continuing on with the regularly-scheduled programming.

It was a delicate dance of acknowledging her concerns while inserting a dose of reality. We were unable to completely reprogram her but she became less panicky as the year progressed.

Substitute nurses are trickier- they definitely don't know my daughter as well, and they often have less experience with children with diabetes in general. I do hear we're making progress with one we've known since early elementary school. Generally, though, we resort to phone calls like the one above, on a case-by-case basis.

I absolutely understand the concerns. A nurse's job is to focus on the medical concern of the moment, with a 'safety-first' mentality. Which begets worry. Which I understand.  I know worry. I worry a lot about diabetes. So does my kid. But after 14 years, we've learned when to worry and when not to. We have learned when the time to worry has passed. We have learned how to incorporate life with a chronic illness into life lived fully. So sometimes we need to talk a nervous nurse down from the ledge.



Why Not A Dozen?


 
I live in Suburbia, USA and I'm worried about diabetes.

I'm worried about the future of access to quality, comprehensive, affordable healthcare.

I'm worried about whether current diabetes treatments are enough to lead to long-term health.

I'm worried about whether there will ever be a diabetes cure for anybody but mice.

I'm worried about the financial cost of diabetes care.

I'm worried about the emotional cost of diabetes care.

I'm worried about the daily to-do list of living with diabetes.


 You Can Spare A Rose By Clicking Here

Then I imagine being a mother of a child with diabetes in Syria. Or Sudan. Or Rwanda.

Their children are dying from having diabetes.


My daily worries pale in comparison.

Fortunately it's February and I'm reminded regularly of the work of Life for a Child. 

One rose for one month of life. A dozen roses for a year of life.

Eliminate one rose from your traditional Valentine's bouquet and donate $5.

Or follow my husband's lead and eliminate the whole dozen.

Roses die and children shouldn't.

One of the best ways I've found to reduce worry is to do something.

Saving the life of a child seems like a pretty good thing to do.




Murky


My twitter feed has been weird for the past couple of weeks.

I use Twitter to follow diabetes-related accounts and current events.

The tweets from the news accounts and politicians are usually easily distinguishable from those from diabetes organizations and bloggers. 'Earthquake rocks Italy' and 'Mayor jailed' fall into an obviously different bucket from 'Drowsy from a 3 juicebox night' and 'Just passed the 30 minute mark on hold with insurance co.'

I now have to take a closer look. Was the tweet about the cost of insulin a Bernie Sanders quote or was it from the American Diabetes Association? Will the link to the article on repealing the affordable care act take me to the New York Times or to a Blogger site? Is the anxious political tweet from a political commentator or from a person with diabetes afraid of losing her health insurance ?

It's getting very murky.

Just Another Morning


6:15     Teen crawls out of bed later than is ideal. Finds nondairy yogurt, granola, berries.

6:18      Checks blood sugar. Programs breakfast bolus.

6:19      Discovers pump's insulin cartridge is almost empty after bolus. Implores mother to fill
             a new one.

6:20      Mother inhales cheerios, chugs coffee, gets dressed, packs lunch.

6:40      Mother listens to stream of consciousness commentary on teen's outfit, hair, and tonight's
             potential homework while filling an insulin cartridge and priming the pump.

6:59      Teen is delivered to school.

7:26      Text: 'I forgot Dexi.'

7:27      Text: 'Unless you put it in my bag?'

7:45      Mother (belatedly) texts back:  'Nope. It's here on the kitchen counter.'

7:47      Text: 'Oh well.'

7:55      Text: 'You wouldn't drop it off for me would you?'

7:56      Mother takes deep breath and decides that, yes, she would (and should) drop it off.

7:57      Text: 'I'll drop it off by 8:15.'

8:13      Mother arrives at school. Mother who is usually happy that school is secured as tightly as
             Fort Knox is not happy today. Mother is buzzed into vestibule with table on which to leave
             forgotten items for kids to pick up. Mother is uncomfortably holding Dexcom thinking, 'I'm
             not so sure about leaving this here' a when kind secretary appears behind large (bulletproof?)
             window in vestibule.

8:15      Mother says, 'Hi. This is a medical device- I'm not sure I want to just leave it here. My
             daughter knows it's coming and will pick it up between periods.'

8:16      Kind secretary says, 'Here- let me take it. I'll give it to the nurse.' Secretary jimmies open
             a pass-through slot like one might find at a shady check-cashing joint, and takes Dexi.

8:17      Mother thanks secretary and leaves.

8:18      Text: 'Gave Dexi to secretary who will give to the nurse.'

8:50      Text: 'Ok I will go grab it now.'

9:29      Proof arrives, in form of blaring cell phone alarm, that teen is in possession of Dexcom: 

 
9:42     Text: 'I'm low so I'm not playing gym.'
 
And so on and so forth...
 



Muffin Chronicles Part 4: Applesauce Theme Week Edition




 




Applesauce Mini Muffins

Since too much applesauce is never enough, here's the latest batch of muffins for the lunchbox:

1 c. whole wheat flour
3/4 c. white flour
1 tsp. baking soda
1/2 tsp. salt
1 tsp. cinnamon
1/4 tsp. nutmeg
(you could also add 1/4 tsp. clove if you like it but we don't)

1/2 c. shortening or softened butter
1/2 c. sugar
1 egg

1 c. applesauce

Mix flour, soda, salt and spices in a small bowl or in a glass measuring cup with spout. If you use a spouted measuring cup (which makes a later step easier) it's still best to measure your flour first with a standard measure for dry ingredients (you know- a metal or plastic one that'll let you level the flour off across the top). Set this mixture aside.

In a large bowl, cream the shortening and then add the sugar gradually until the mixture is light and fluffy. Then add the egg.


The shortening/sugar/egg mixture will look like this.
Also of note, these single-serve applesauce packs are
1/2 cup each which is convenient.





















Add the dry ingredients, alternating with the applesauce, to the bowl containing the shortening mixture. Stir between each addition. I usually add about a quarter of each at a time. This is the part my daughter has always loved to help with!



 


How much dough? I just used a teaspoon from my silverware drawer-
one heaping spoonful per muffin cup.



Spoon into mini-muffin tins and bake at 350° for about 18 minutes until a toothpick inserted in the center comes out clean. I made 33 mini muffins for about 8.5 g. each.


The recipe is adapted from my husband's Nana's applesauce cake recipe. To adapt it back for a great dessert, use all white flour and a full cup of sugar. Bake it in a standard sized loaf pan for an hour (which sounds like it would be too long but trust me, it isn't).

We love this recipe because - yum - but also because we almost always have the ingredients we need for them in the pantry.
 
Hope you'll enjoy it too.



Gym Win


Out of all the anticipated diabetes challenges of high school, gym has been the biggest thus far.

Marching band's 14 hour days, including an outdoor week in the August heat? We handled it.

New nurse? She's great.

An intense and stressful academic schedule? Intense and stressful, but managed.

Gym? A disaster since day one.

I wrote about it in the fall. Gym is always in the morning but that's where the predictability ends.

Gym class happens three out of every four days. At 8 or 9 or 10 a.m. Some days are 'fitness days' with sprinting or other heavy cardio. Some days they play volleyball which my kid enjoys playing at a moderate pace. Some days feature floor hockey, during which the senior boys apparently dominate the puck and give nobody else a chance to play. Some days gym is preempted by 'peer leadership,' which can involve either active or sedentary group bonding activities. All we can be certain of is that the whole thing is totally unpredictable. Therefore, adjusting basal rates didn't help. And changing the breakfast bolus was useless. Our next best hope was this:


Squeezy Applesauce!
Toddler applesauce has greatly reduced trips to the high school nurse's office. It's fifteen carbs provide slightly more nutritional value than a straight juice box. It's easier to consume while changing into one's gym clothes than a clementine or a handful of grapes. It's even sort-of fun? And, most importantly, it's working.

She makes the decision whether to consume a pouch before gym based on three factors: what her blood sugar currently is (usually based on the Dexcom, inclusive of arrows), what the day's anticipated activity is, and what time it is (she's more likely to drop fast if there's still a bunch of breakfast insulin on board). There are occasional problems, like when an anticipated floor hockey day becomes an unannounced outdoor running day due to good weather, or when she's had an unusual breakfast and the 'insulin on board' factor is harder to predict. But overall, this tactic is (thus far...knock on wood...fingers crossed) a winner.

Also a plus? We won't be running out of squeezy-sauce anytime soon due to today's 5/$9 sale at the grocery store. She's not sure about the new 'applegrape' flavor, but if you're sucking it down in three gulps, how much does flavor really matter?






Advocacy


I've shared with you my first New Years plan: spending more time with my fellow 'diabetes people.'  The second plan is much less fun, but in my opinion, unavoidable. I plan to spend more time advocating for people with diabetes. Phone calls, emails, tweets and more appear to be a necessary evil for the coming year.

I started today, thanking my representatives who support the parts of the Affordable Care Act which are important to me, and contacting some who do not. The ACA is not a perfect law, but eliminating it without a reasoned replacement would be a setback not just for people with diabetes but for those with all kinds of chronic and expensive diagnoses. Repeal of the ACA will not only impact people who've been able to buy insurance because of it, but also the greater majority of us with employer-sponsored insurance who've seen new benefits and protections through the law. This article explains those parts of the law in greater detail, including coverage regardless of preexisting conditions, coverage for preventative care and the elimination of annual and lifetime maximums.

My daughter is at the age where she's considering career choices. The existence of protections for her as someone with a pre-existing condition and who has high annual healthcare costs is important to us. We'd rather she not have to choose a career, and a job within that career, based primarily on whether she can obtain quality health insurance and be assured that her coverage will never lapse.

Are you concerned too? Here's an easy way to get in touch with your representatives:

http://diabetespac.org/

I'm certain this is only the beginning of my advocacy this year. At the rate insurance companies and prescription benefit managers are picking and choosing what's covered, it's likely I'll be in touch with them. We're fortunate to be in a great school district, but small conversations still need to be had from time to time.  Other political issues may arise locally or nationally which I feel require my voice- not just for my own child's benefit but for that of the whole diabetes community and beyond.

Diabetes People

We were very fortunate to find a parent support group shortly after my daughter's diabetes diagnosis. People in that group were also involved with the local JDRF chapter and I got involved there too. Once we got our heads above water with the help and support of both of those organizations I found myself able to turn around and help others. I encouraged the next round of newly-diagnosed families at the support group meetings. I got involved in planning and running a local JDRF walk. In the three years after diagnosis, personal contact with other 'diabetes people' was a big part of my life.

Then, because of a lay-off and a subsequent job opportunity, we moved back to the area where I grew up. We continued to participate in JDRF walks, and I did help with walks at the elementary school, but my contact with our local chapter was minimal. There was not a parent support group in the area. We were fortunate to know a couple of nearby families with T1D and so had, and continue to have, an informal network of information and support. I found the diabetes online community, and there found both personal support and a way to be supportive of others by starting this blog. For a while that was enough.

Now, though, I'm feeling a pull.

I'm still incredibly grateful for those moms and dads I met during the first months after diagnosis. Having those conversations provided a framework for how we still live with diabetes today. There's nothing like sharing stories, laughs, information or tears with people who have faced the same challenges.

In lieu of New Years Resolutions, I tend to think of something I'd like give some extra energy to over the course of the year.  Some years it's practical, like learning new recipes or starting a vegetable garden. Some years it's more social, like sending thank-you notes for even the littlest of gestures. This year?

I'll be looking for ways to spend more time with other 'diabetes people.'