The Appointment

Endocrinologist appointments are important touchstones in life with diabetes. It's a quarterly or tri-annual check-in at which months of diabetes are assessed as a whole.

We went into the city for my daughter's appointment yesterday.

There were no extraordinary clinical components to the visit except that she's now officially taller than me. Otherwise it was a run-of-the-mill appointment with conversations about adjusting basal rates and when to get lab work done again.

What distinguished this appointment for me was subtle but significant.

A few minutes into the conversation I noticed two things.

I had said nothing since greeting the doctor when we walked into his office.

I was sitting back in my chair while my daughter was on the front edge of the chair, leaning towards the doctor's desk, and talking with him about her diabetes.

She's been going to the endocrinologist since she before she could walk.  Over the following 16 years, she's answered a few more questions and engaged in a little more conversation each visit, but I've always taken the lead. Until yesterday, when I'm pretty sure she did.

I had not asked her to be more involved, and I'm not even sure she was intentional about being such a big part of the conversation. I tend to think it was more of a natural progression. She's come a long way since I had to carry a diaper bag full of toys to entertain her through every appointment!

You Know What To Do

We visited the endocrinologist a couple of weeks ago.

My daughter's A1C was up a smidge, which isn't unusual at her end of summer visit. We do better keeping her blood sugar stable when her schedule is more predictable, as it is during the school year.

The numbers downloaded at the beginning of the visit from the pump and Dexcom covered the prior two weeks of blood sugars. One week was from vacation and the other was from the youth group mission trip. Both involved strange meals at strange times, late nights, periods of heavy activity at all different times of day and night, and at least during the second week, a few moments of stress.

There seemed to be a couple of patterns, but they could just have easily been a pattern of what happens when you follow a heavy, late lunch with a busy afternoon, an unusual dinner, a walk, and no 9 p.m. snack.

After talking things over, the endo said something like this:

Look- it looks like you need a little more insulin in a couple of different places here. You could tweak a couple of things now, like maybe this after-dinner spike, but maybe you don't want to do too much yet. Why don't you wait a week- get through band camp where you don't want a bunch of lows, and then once school starts look at these patterns again and make the adjustments. You know what to do. And hopefully by then you'll have the G6 which'll make it so much easier.

Band camp was, predictably, another week of unusual eating, busy schedule and extreme heat. It felt safer to run a little higher than what we'd ordinarily consider ideal.

School started last week with a weird schedule for the first day and an unexpected half day on day 2 due to a heat advisory, which was followed by a takeout lunch with friends. Friday night was the first marching band performance at the football game, preceded by a 4:30 p.m. dinner. This week will be slightly more predictable, so we'll see if some basal tweaks we made over the weekend make a difference. And we'll add more insulin for dinner. That was the one change we did make after the endo visit but it isn't doing the trick yet. No G6 yet either- more on that another day- but we've been managing T1D in a growing, changing child since long before any CGM at all.

We'll keep watching and adjusting. We know what to 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?

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.

I'd Rather Get a Mani-Pedi

The Healthcare Experience - Thursday 5/19 Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

My daughter attended her 8th grade 'semiformal' dance last weekend.  As a treat, she and a few friends went after school the day before the dance to get  manicures and pedicures. She was there for an hour and half, had her feet and hands pampered, sat in a massage chair, ate a coffee flavored hard candy and came out feeling relaxed and good about herself.  The price was half that of the coinsurance we'll pay in a couple of weeks when we go to the endocrinologist, and that doesn't even factor in the cost of health insurance in general.

I realize that the endocrinologist has significantly more education, expertise and support staff than the women who work in the nail salon, but bear with me here. 

What if she'd arrived at the nail salon and there had been a dozen people in line ahead of her, forcing her to wait in an uncomfortable chair for an hour?  What if she sat down at the little table to have fingers done and after the seventh digit, the manicurist sent her home because she was out of time?  What if once her fingers were done she went over to the pedicure area and was told pedicures required a separate appointment time at this salon so that even though she thought she'd booked a combination package there was no way she could have one today?  What if once she'd chosen the perfect polish color to match her dress, she was told that color was not included in the price and that she'd have to purchase the entire bottle at an exorbitant fee in order to proceed? 

Are you catching my drift yet? The crux of my argument is this: if any of these scenarios happened at our local nail salon we'd go elsewhere and write a scathing Yelp review for good measure.  Yet in the healthcare marketplace we put up with so much.  Our choices are limited, and while we sometimes put up with issues at a mediocre medical practice in order to get good care from a provider we trust, we shouldn't have to.

Most of us are paying through the nose for diabetes care.  Shouldn't we get a friendly welcome? Shouldn't there be a comfortable chair (massage chair preferred but not required) during a short wait, and maybe a complimentary cup of tea or glass of water? Shouldn't we expect the visit to have a seamless flow from vitals to data download to face-to-face time with the doctor?  Shouldn't the provider look us in the eye and ask what diabetes issues we need to talk about?  Shouldn't our insurance cover the diabetes care and equipment we and our doctors believe to be most appropriate for our individual needs?  Shouldn't our face to face and phone conversations with diabetes care and supply providers leave us feeling like the customer is always right and always comes first?

It's a huge problem to which I wish I had a solution.  We've been proactive over the years in shopping around to find the best endocrinology practice we have access to based on our insurance and geography in any given era.  When it's possible, I advocate for access to what we need both on an individual level and on a larger scale.  Nevertheless, in annual copays alone, we're spending an extravagant vacation's worth of money each year for service we'd almost always rate poorly in the 'reviews' section on a given website, and which we'd often choose never to pay for again.  If we had a choice.

What do other people think about their healthcare experience?  Click here to find out!

Trust

"Okay- let's do this," said my dentist, smiling at me as he put on his gloves and reached for the drill.

A few years ago, my knuckles would have already been white as I clenched the arm rests and squeezed my eyes shut.

This week?  I was o.k.  I wasn't thrilled, of course, but anxious isn't a word which comes to mind either. Why the change?

I like and trust my dentist.  His positive reinforcement at cleanings has helped me improve my overall dental health. And we've been through things together:  broken teeth, a root canal, a handful of fillings some of which were in awkward spots, and most recently an exam and x-ray because I was terrified I'd broken my jaw. He is kind, funny, and has a way of putting even the biggest dentist-phobe at ease. Most importantly, he does his job well. He's up to date on and uses the latest techniques and technology.  I've never experienced measurable pain during a procedure. He works fast and efficiently to minimize my discomfort. And everything he's done so far has turned out just fine.

So yesterday, as the drill revved up to clear the way for a new crown due to a broken tooth from the aforementioned fall and not-broken jaw, I took a deep breath and assumed everything would turn out just fine.

I white knuckled it through countless dentist appointments for the first 35 years of my life.  I dreaded them and often postponed them.  I put off taking care of dental problems because I was so uncomfortable.  And when I went for a cleaning I often left feeling even worse, having been chastised for the state of my gums or the cavity in my wisdom tooth.  It turns out I just hadn't found the right dentist.

This week's experience reminded me of the equal importance of finding a good endocrinologist.  We don't dread those appointments either.  We like the doctor.  We receive positive reinforcement for the work we do at home to maintain diabetes health.  We've been through stuff together: new schools and nurses, first independent site changes, growth spurts, starting a dexcom, and now the beginnings of puberty.  He is smart, kind, funny and very concerned for my daughter's health and overall well being.  He's given us countless effective suggestions over the years.  My daughter's diabetes management is, with his help, just fine.

I know there are people out there who do not realize what having a good endocrinologist feels like. They dread their appointments.  They falsify data so they don't get yelled at.  They leave feeling hopeless. They receive little or no useful advice from the doctor.  They float through years of diabetes care assuming they're entirely at fault for high A1C's or endless rounds of lows.  They feel like I did about going to the dentist, and they don't know that it could be better.

No, I don't put little stars and smiley faces around the calendar dates of my dental cleanings, nor do I do so for my daughter's endo appointments.  But I don't dread them. I enjoy the people I see there, and I leave feeling improved for having gone.  If that's ever not true, I'll know to go elsewhere.

Making It Fun

Yesterday was endo day. We had a 4:30 appointment in the city.

Yesterday also happened to be an extra long weekend day off from the music program my daughter attends in the summer. She's usually there from 8-3.

So what could have been a rare lunch and afternoon at the pool with friends looked instead like it would be a boring morning of errands and chores, a boring peanut butter sandwich and maybe some screen time before a long car ride, a doctor's appointment and  another long ride home through rush hour traffic.

Not so fast.  Maybe we could make some lemonade out of those lemons.  A little creative thinking, mapquesting and internet searching led us to a truly fun day at the zoo. There was some challenging driving involved, and a little anxiety about the timing of the whole operation, but we went for it.

We got ourselves up and to the zoo when it opened and spent about five hours wandering around watching penguins, monkeys, bears, and especially this baby gorilla.  Who was adorable.  

We had an awesome time.  We arrived at our appointment plenty early.  The appointment went well too. But dinner conversation revolved around the zoo, with any diabetes-related news taking a definite back seat.

Living with diabetes comes with a long, annoying list of responsibilities. There are days when diabetes usurps possibilities which would be more fun.  Sometimes sitting out an activity with a low blood sugar, or missing an after school activity because of a doctor's appointment is just the way it is.  But sometimes, with some extra effort, it can be an excuse to do something great.  I highly recommend taking advantage of those opportunities.  Especially if there's a baby gorilla at your diabetes clinic's closest zoo.

Worth The Effort

I'll confess. Sometimes I just go through the motions during an endocrinologist appointment.  We have an awesome doctor at an excellent clinic.  I care very much about keeping my daughter's diabetes 'under control' (or whatever other phrase you want to substitute because you too recognize the impossibility of that one). Yet sometimes I'm just not into it.  Maybe I'm overwhelmed by too many concerns or questions.  Maybe I feel like things are going fine and we don't need much help at the moment. Maybe the trip in, the parking and the check-in process have sapped my day's allotment of mental energy. Maybe there are other things going on in life which seem more important. Maybe it's just a bad day.  It happens.  I hope when I'm not feeling terribly focused, I can look back on our most recent appointment to see why I should try to dig a little deeper.

I didn't come into this particular appointment with a written list of questions and concerns.  I wasn't geared up to address a series of specific problems.  I knew a things were not going perfectly, so there would be some tweaks, but I wasn't feeling the intense need for help that I sometimes do.  Yet as I focused on the blood sugar graphs before us, and on what the doctor had to say about them, I found myself fully engaged.  And engaging him.  So a conversation which could have glossed very simply over Sunday night's lows turned into a long and helpful conversation about the absorption rates of all kinds of different site locations and what the factors are.  A suggestion to change the correction factor wasn't just jotted down, but led to some really interesting information about the general math behind correction factors.  And on we went. By asking follow-up questions, I picked up several useful tidbits of information.

We also had conversations which included my daughter as an active participant. We addressed some things I already knew (pre-bolus breakfast at least 15 minutes ahead, for example). But what I realized as we talked was that my daughter hearing these things from the doctor was entirely different than hearing them from me. I can tell her to pre-bolus every day, but it's often as effective as telling her to pick up her room.

There are countless other reasons to use our endo time wisely. High co-pays, making the most of the time away from school and the rest of life an appointment requires, and taking advantage of the unique opportunity to receive high quality medical care are reasons which come to mind.

So even if just one of the above reasons is true for you, I'd encourage you to make the most of every endo appointment.  You're bound to gain some nugget of information or support which will make it worth the effort.

On Our Own

'Snow will change over to a wintery mix this morning after accumulations of 6-10 inches.  Freezing rain will change back to snow mid-afternoon which will taper off around the evening commute.  The national weather service has issued a flash freeze warning beginning at 4 p.m. and continuing through the night.'

That was the weather situation which prompted me to cancel yesterday afternoon's endo appointment. We undertake a drive averaging 45 minutes into the city through heavy traffic to visit the diabetes center.  There are multiple hazards on a sunny day in June.  The new-to-me concept of a 'flash freeze warning' convinced me we'd definitely be better off at home with a jigsaw puzzle.

When I called to reschedule, the receptionist was very understanding but the next available appointment was in mid-March.  So it's not until then that we'll head in for a face-to-face professional assessment and help. Our usual 4 month interval between appointments will turn into more than 5.

Four months is really the right amount of time for us. As we approach each appointment, we inevitably start to build a list of problems for which we need solutions.   Maybe the after dinner lows discussed at the last appointment, which were perfectly resolved for a while, have turned into highs.  Or the afternoon basal rates seem way off but we haven't been successful in tweaking them ourselves.  Perhaps we're considering a new type of infusion set or want to talk about a new technology coming down the pipeline. We always need a prescription or a school form or a lab slip.  By three and half months, we're running out of ideas and enthusiasm.  We could do some research, try new tactics, or call the diabetes center for help, but a visit is so much better.

A visit allows us to take the sum total of all of the diabetes problems we're facing and hand them over to someone else.  'Please fix this,' we say.  While our endo does not have a magic wand, and therefore can't make it all go away, he can look at it with a fresh and well educated eye.  His suggestions work, and are often beyond what I could have come up with on my own.  He's able to put the pile of data downloaded from the diabetes devices together with the information we give him in an incredibly helpful way.

For just a part of an hour every 4 months, someone else worries about my daughter's diabetes.  Someone else struggles with the countless numbers, the trends, the mysteries of it all.

For the next month or so it's still ours to think about and do the best we can with.  If we're stuck with an issue that's particularly challenging, or if we need a prescription refilled, I'll call.  Otherwise we're still on our own.  March can't come quick enough!

Not a Full Moon

As we pulled out of the parking lot and headed towards home, I turned to my daughter and asked, "Is it a full moon?"

"I don't think it's even close, but wow."

This week's endo day was full of chaos.

The traffic on the way in was full of terrible drivers making bizarre decisions.

As we turned into the parking lot, I let out a sigh of relief.  "Finally someone will take this car away from me for a little while." That was before the valet attendant nearly ran over my daughter as she tried to enter the building.

The bustle was evident as soon as we entered the clinic doors. Phones were ringing.  There were several patients waiting at the front desk.  Staff were scurrying around.  We took the last available waiting room seats and waited to be called for the traditional first step of height, weight, A1C and meter downloading. We were half an hour early for our 4:00 appointment, so expected to sit a little while.  A big dent had been made in homework when at 4:10, our endocrinologist himself came around the corner.  "Do they know you're here?" he asked.

"Yeah...I mean we checked in..."

He disappeared into the height, weight, etc. room and seconds later my daughter's name was called.

He took us into his office before her pump had finished downloading and started with the preliminary conversation. Soon the pump and its information had been delivered.  "So we were talking about lows, but I'm seeing a lot of high numbers here in the evenings."

Indeed, the week we were viewing had some awful looking 270's and 300-somethings.  Which didn't sound familiar at all.  Knowing that sometimes they print out a week or two back, I glanced over at the date.  "This says it's from August."  (Vacation week to be exact.)

On we went like that, with the doctor needing to take my daughter's pump in hand to accurately see and discuss the current basals, total daily dose, correction factors, and insulin to carb ratios.  We used the downloaded Dexcom graph to discuss some potential treatment changes. We came away with a few suggestions for dealing with the recent school lows, and a minor tweak for afternoon.  But it was hard to see the direct impact of insulin doses on blood sugars without the pump download. We never received the A1C results.  They'll let us know.  Maybe, I guess.

This is a top-notch clinic, with which we've always been happy.  I'm sure there's a good explanation for whatever trouble the medical assistants were having. There was at least one unfamiliar face in the back room, either new or subbing.  I overheard at least one other conversation about difficulty downloading data.  I'm pretty sure the whole thing was a fluke.  It would just make more sense if I could blame a full moon.

Best Advice

In the past 11 + years of diabetes, we've been given all sorts of advice about my daughter's health and care. Advice has come at all stages, from all sorts of people. At this week's endocrinology appointment, I was reminded of a piece of advice which falls at the top of my list of favorites.

Looking like perhaps he'd just been through a challenging appointment or two, the endocrinologist sat down at his desk, glanced at the dexcom printout and the A1C slip and said, "Ahhh...this should be easy."

"It should?"

"This A1C is very nice.  And these graphs look pretty good too."  He shared the A1C and discussed it with my daughter.  Then he asked us, "Do you know how you did this?"

"Um...not really.  If I did, I think I could make a fortune," I replied as my daughter merely shook her head.

"Well I do.  Look at this printout here.  This part of the graph is the overnights."

Ah, yes.  The advice we received years ago from our first (and favorite) diabetes educator:

If you can stay in range overnight and wake up near your target number, everything else will fall in place.

Being in range overnight takes care of 10 hours of the day right off the bat. Then, if she wakes up at 100-ish instead of 180-ish, the breakfast spike is less significant and the lunch number is better too.  All those other spikes from the miscalculation of carbs or the crummy site become blips on the screen rather than compounding factors for an already high average.

If, the uninitiated or the overachiever might ask, this overnight thing is the key to success, why don't we just keep her numbers in range overnight all the time?  I wish we could, but as the old pro and the realist know, stuff happens.  In this case, growing happens and hormones happen.  Every so often things slowly get out of whack, particularly in a growing kid.  The 5 a.m.creep up begins.  Or the 2 a.m. correction comes into play.  The evening carb ratio no longer quite does the trick.  Sometimes, all of these things seem to happen at once.

At our winter endo appointment, my daughter's A1C was 3/4 of a point higher than it was last week.  We spent a good part of that appointment addressing high numbers at 10, 2, and 6 a.m. It felt like the whole night had gone haywire all at once and like untangling those numbers would be like untangling the Christmas lights: a task best left to somebody else. We gladly accepted the help.

As winter turned to spring, we continued to tweak basal rates and the evening carb ratio. Problems crept up one at a time and we apparently managed to keep things under control. Can we keep it up all summer?  I don't know.  I do know that I should pay close attention and call in professional reinforcements if I need to, because:

If she can stay in range overnight and wake up near her target number, everything else does, indeed, fall into place.

A Teaching Moment

We visited the endocrinologist this week.  As he glanced at my daughter's A1C slip, he was pleased with what he saw.  "This is what I'd call a good A1C."  Then, turning to my daughter, "Do you know what kind of number a good A1C would be?"

"Ummmm..."

The omnipresent chart was on the shelf to her left.  She looked it over.  "6?"

"Six would be very impressive.  Five would be amazing.  But in people with diabetes, particularly kids, five would be almost impossible without some really nasty lows.  What we aim for in kids your age is an A1C around seven, and you've done that very well."

There was much to appreciate about this little exchange.  The teaching. The relationship building.  The gentle passing of the torch of responsibility for understanding the disease to my daughter.  The affirmation of our hard work which, I know from experience, would have happened no matter what number showed up on that A1C slip.

We don't go to the closest pediatric endocrinologist.  Our visits require a sometimes hairy, sometimes traffic-ridden journey.  When we arrive, we look like we're planning to camp out for the duration, with snacks, homework and books in addition to the usual diabetes baggage and the materials we need for the appointment.  Despite these hassles, we never think twice about repeating this expedition.

I hear horror stories all the time about people's relationships with their doctors.  I realize we're fortunate to live in a part of the country with lots of choices, and that we're fortunate to have insurance which allows us to make them.  Some people have neither.  But if you do, and you're not happy, find a great doctor.  It's so very worth it.

Orthodontist As A Second Language

I don't speak 'orthodontist' very well.

My daughter and I have been visiting one for a few years now.  A year and a half ago the first orthodontic appliance was installed: a 'space maintainer' in her lower palette.  Three weeks ago, she had braces put on her upper teeth, complete with head gear.

We've had many consultations with the orthodontist.  X-rays and brochures have been viewed together and discussed. Options have been explained.  I'm embarrassed to admit that I understood about half of it.  If I'm lucky.

In contrast, when we go to the endocrinologist, I follow along completely.  I understand all the words.  I ask questions if something's unclear and keep asking until I understand the answers.

Why the disparity?  Our orthodontist is not the problem.  She's a smart and articulate professional. She takes her time explaining things and is always willing to take more.

I think it's me.  To be exact (this may sound bad), it's the degree to which I care about what she's saying.

When we leave the endocrinologist's office, I become the resident expert on diabetes for the next 3-4 months.  I need to understand every detail about the diabetes treatment plan in order to make it happen 24 hours a day, 7 days a week.  I need to be able to explain it to my husband, the school nurse and sometimes even the pediatrician. During every office visit, I'm absorbing information about how to keep my child alive and healthy every day, and for as long as possible.  It's information which is crucial for me, and increasingly so for my daughter, to fully understand.

In our initial meetings with the orthodontist, we discussed a 2-3 year plan to straighten teeth.  I understood in a general way that the space maintainer would hold her bottom teeth where they were. The braces would push (pull?) teeth to the back of her mouth to make room for a couple yet to come in near the front. Details of exactly how it all works remain blurry to this day.  But in this case any missing information will not be life-threatening.  I'm able to leave those details for the orthodontist to worry about every 8 weeks when we visit. I need to know a limited amount of information, like not to feed her hard, chewy foods and how to help her get the head gear on.  I need to nag her to wear it and to keep her teeth really clean. Beyond that, my basic understanding of the process was enough for me to feel comfortable signing off on it.

Of necessity, endocrinology needs to remain my primary language and focus.  I'll just have to muddle through in orthodontist.  It's kind of a relief not to have to master another whole language.

Needs More Insulin

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 winter.  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, 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.

To Share or Not To Share?

 

Today's prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see? 

Embedded in this question, I think, is another:  How helpful, kind and realistic is your endocrinology team?

I know plenty of people equate the endo appoitment to a big test, or a performance evaluation. These people try to hide their recent out of range numbers.  If they can't do that, they find themselves cowering in their chairs feeling berated by the discussion of them.

To me, the only way to get the most out of endocrinology appointments is to share as much information as possible.  There's really nothing I 'hope they don't see.'  The more they see, the more they can help. 

Why the 300 the day before yesterday?  Bagel day at school.  She forgot to combo-bolus in the nurse's office, but even when she does she comes out high.  Any ideas, doc? 

"Don't eat bagels?" (Said with a wry smile...we love his sense of humor.) But then he goes on, "I like that it looks like you kept checking and correcting.  In those situations, that's the best you can do and you did it well.  I had a patient the other day tell me she boluses a full 20 minutes before the bagel and sets a temp basal rate when she starts eating it.  You could try something like that next time, maybe.  Basically, bagels are just bad news...but once in a while you're gonna eat one, so keep experimenting."  Not only did we benefit from sharing our bagel disaster, but we also benefitted from someone else doing the same.  We came away feeling empowered, not guilty.

We were fortunate to start out at diagnosis with an endocrinology team who understood that there was more in my daughter's life than diabetes.  When we moved, we did our homework and found a doctor with the same philosophy.  When he moved, we changed practices.  Perhaps the types of professionals we've contracted with for care influences my perspective. 

Our type of endocrinologist is one who would ideally follow my daughter around at all times, looking at her diabetes management and how it intersects with the rest of her life.  He or she would spout out helpful advice along life's diabetes journey.

Alright, maybe being followed by an endocrinologist 'at all times' would get a little creepy.  Yet at the heart of the matter, the idea is the same. Those extra eyes on the quarterly downloaded blood sugars are so much more helpful if they're able to see as much as possible of the person's life those numbers came from.  That's why we share it all.

Many Miles

One of the annual steps we take as part of our tax preparation is to calculate the number of miles traveled for medical care.

This year's family total was 495.  All but about 20 of those miles were for my daughter's appointments.

Granted, that's not all diabetes-related.  There's the orthodontist, and the eye doctor, and the regular pediatrician and the dentist, and another specialist thrown in here or there for good measure. 

Regardless of the destination, that number translates into significant time spent in our car.  Many homework assignments have been completed there.  Many snacks have been consumed.  Many magazines have been read.  Many games of Angry Birds have been played.

Some of the car time, and we'll add waiting room time, is not quality.  Video games or mindless radio listening are sometimes the order of the day.

Yet every so often it becomes an opportunity.  Conversations take place about school, friends, or the world around us which we might not ordinarily get into.  Medical conversations take place too, particularly on the way home, reviewing what happened at the office. 

The travel to these appointments often takes time away from the school day, or pre-empts an after school activity.  The driving there and back can be tedious or occasionally challenging.   It sometimes feels like time we will never reclaim.  Every so often, though, it becomes time we never otherwise would have had. 

REALLY?

My mouth hung open and all I could seem to utter was, "REALLY?" when the doctor shared my daughter's A1C yesterday.

It was a good 'really.'

It was an absolute surprise.

There was no correlation with the 90 day average on the glucometer.

There was even less correlation with my sense of how things had been going.

With the numbers in front of us, it became a little clearer.

"See here?  The middle of the night numbers are good, and wake-up is good.  She's coming down well after breakfast too.  That shows us that she's spending a great deal of the day in range."

Unfortunately that 'great deal of the day' is not the time I actually spend with her.  From mid-afternoon through the evening, we're battling one 280 after the other, and we're testing constantly.  To me it feels as though she's constantly over 200. Every attempt to reverse course has hit a dead end.

We left the appointment with some new strategies to get the latter part of the day under control too. We have hope that high blood sugars will soon stop haunting our afternoons.

It's easy to beat ourselves up over bumps in the road which is diabetes.  If you're like me, it's then easy to turn these bumps into maddening, anxiety-producing mountains.

The silver lining is that yesterday, I had a very pleasant surprise.