Ten Years

'Today's the day,' I thought as I bounced out of bed. I threw on shoes and a jacket and ran out the front door.  I ripped my newspaper out of its plastic bag and impatiently flipped it over to see the front page headline.

"Govenor approves ...."

Too late to make the front page, I guessed.  I quickly fired up the news app on my phone and started to scroll.  Nothing.  How could this be?

There must be some mistake.  I clearly remember the conversations ten years ago today.  I was told not to worry.  I was told to be patient.  I was told developments were occurring every day.  I was told that in 10 years there would be a cure for diabetes.

Ten years ago today, as my little girl laid helpless, full of tubes and hooked to countless monitors, I was told to be grateful for what I had.  And indeed I was and continue to be grateful that she survived the trauma of diabetes' onset.  I'm grateful for each and every helpful person, vial of insulin, and useful piece of technology we've encountered since that terrifying day.

Yet every extra day she spends living with diabetes makes me increasingly eager to open my newspaper one morning to find that headline.  The one that tells me it's all over. 

It turns out today is not that day.  It's unlikely tomorrow will be either.  Yet I live in hope that some day, 1, 5, 10, or 27 years from now will be that day.  After all, someone in an emergency room somewhere today must be being told not to worry because "there should be a cure in less than 10 years."


The tragedy in Newtown CT and its aftermath are heartbreaking.  There are difficult and complicated questions to be addressed.

Yet, for some of us left behind, one of the repercussions feels familiar.  It's the anxiety of dropping a helpless child off at school, in the care of others.  Those of us with children with diabetes (and countless other medical, emotional, or mental health needs) are particularly familiar with this feeling. 

So this morning, as I dropped my daughter off at school, unable to not think about Friday's terror, I summoned some coping skills I've used before. 

I kissed her goodbye, told her I loved her, and confirmed our plans as to how and when she will return home.

I watched her cross the street with the crossing guard and walk to the school doors. 

Then I brought to mind the adults she will spend the day with, reminding myself that I trust them and that they have her best interests at heart.

Each day, though some days more subconsciously now, I remind myself that the staff at school know how to take care of her.  They know about her medical issues and how to address them.  There is a plan in place for her care.  Beyond that, her teachers and other school staff are concerned about her as a growing and maturing individual and do their best to help her in any way they can.  This is, of course, their job.  But from what I see from the outside, she's been fortunate to have teachers and other staff members who take it an extra step.

By extension, I must then trust that in all other ways her school is as safe as possible.  There are plans in place for many types of disastrous situations.  Communications from the school district say more plans are being made.  She is in the care of good and kind people who have their students' best interests at heart.

There is no way to be sure what each new day will bring.  Potential hazards lurk around every corner.  All we can do is prepare for foreseeable eventualities as best we can. Then we take a deep breath, and send our children off into the world, trusting those in whose hands we leave them to do their best to keep them safe.

How Low Is Too Low?

An hour or so after tucking her in, I checked my daughter's blood sugar. 


What a great number.  Unless it's 9:30 at night.

At 10:15, she was still 85.

At 12?  85.

Bizarrely consistent.  Maddeningly sleep depriving.

I set a temporary basal rate and set the alarm for 1:30.


Good enough to set the alarm for morning.

Breakfast number? 89.

On the one hand, seeing 85 for every blood sugar check would be excellent.  It would, of course, require a cure, but a girl can dream.  At 9:30 at night, sans cure, it's frustrating.  It's not really low.  During the day, I'd certainly let it go and have her check again in a little while, or if she started to feel it. 

Yet when she's sleeping, it's a tough call. Ten points lower, and I'd be reaching for a juice box, but 85 is no reason to wake her from much-needed sleep. Even a smidge of juice would probably raise her into the high 100's, less desirable than 85.  Yet 85 is not comfortable.  It's a quick drop from there to significant hypoglycemia: a dangerous proposition in the middle of the night. I should have set the temp basal earlier on in this scenario, if for no other reason than for my own peace of mind.  But otherwise, I don't know what else would have helped.

The worst part is that the reason for hours of straight 80-somethings was not some fabulous basal rate tweak or the discovery of a perfect dinner menu. 

It was the cold she woke up with this morning. 


Last week, I announced my intention to explore new territory as far as pump sites were concerned.

Monday evening, I informed my daughter of this plan.  I followed my own advice and began with an explanation of the medical importance of site rotation. She'd heard the spiel before and understood.  I made sure there would be plenty of time to choose among three possible locations, and for both of us to work up our courage.  I laid out the reward system.

Despite my thorough approach, I expected a different reaction.  Reluctance.  Fear.  Tears.  Outright refusal.  All were possibilities.  As a rule, suggestions of new areas have been stubbornly vetoed in the past.

Instead I heard, "You mean I really get a prize every time?"

Never underestimate the power of tic-tacs or plastic penguin plates in convincing an 11 year old to try something new.

"Yes...as long as it's a new spot."

"And if we do 4 in row, we really get to go out for frozen yogurt?"

"Yep...we really do."

"O.K., but I'm only doing it for the prizes."

We've started with small excursions from the comfort zone. She was surprised to find she liked the area near her hip quite a bit. We tried a higher spot, and a lower one, experimenting to see what was comfortable.

We'll continue on with these small steps for a while, essentially expanding the current circle by 3-4 inches.

Eventually, I plan to throw in a really new spot (belly, thigh) as one of the three choices.  She won't choose it, but she'll think about it. Then I'll up the ante again.  Big rewards for entirely new body parts, and back to the usual prize every 3 times for the expanded territory.

Provided the next site change is successful, we're off to the frozen yogurt shop for a reward.  Since my own prize is now in sight, I might be brave enough to try her hip again.  Angling the insertion set there felt precarious, but in the end, it worked out fine.  Practice makes perfect.

Unlike my daughter, the prizes are not my primary motivator here.  Her health is my first concern. Yet, the truth is, I'm already wondering if there will be a fun new seasonal yogurt flavor to try.


We really do our best around here to move on with life despite diabetes. It doesn't get a say in where we're going, or a choice of how we get there.  It's constantly with us, and does get its needed attention, but we make every attempt not to let it weasel its way into places it doesn't belong. 

Yet, this philosophy isn't fool-proof.  Diabetes has its ways.  Often it doesn't even need a major ploy to get to us, just a well-timed nudge.

Take last night. 

My sleepy daughter reappeared at 9:15 p.m. after being tucked in at 8:30.  Wearing her pink and red angry bird jammies, squinting in the living room light, she said, "I couldn't sleep.  I'm 65.  I'm also out of test strips in my room."

We rose from the couch. I fetched the juice and my husband fetched the test strips.  There was a dreary quiet about these tasks.  I walked my daughter back to her bed, retrieved her stuffed rabbit from under the covers, and gave her a hug.

"You ok?"


"I'll check you again in a little bit. Hopefully you'll sleep now."

"I hope so.  I'm tired."

"I know.  I love you."

"Love you too."

Sometimes I can tough out this routine mindlessly.  Juice, kiss, bed.  All in a day's diabetes work; better luck next time.

Yet last night, it just felt extraordinarily unfair.  All she wanted to do was get a good night's sleep and wake rested for school. Instead she was up needing juice and worried about her supply of test strips.

It made me sad.

Location, Location, Location

Since my daughter started pumping insulin 8 years ago, we've used the same territory for her pump sites.  It was chosen when she was 3, because for her it was out of sight, and less tempting to mess with.  Now, to her, it's just where her site goes.  The endocrinologist agrees this general vicinity may be best, since she's on the thin side and some of the other possible spots (belly, arm) 'don't have much meat on them.'  Yet he's offered ideas for expansion.

Sites could be put lower or higher, over to the hip, or down to the thigh.  In the past this suggestion has been more theoretical. We weren't seeing blood sugar issues, or scar tissue, or infections.  It's something we'd try once in a blue moon when she was feeling very brave and I was feeling very patient.

I'm thinking we're now going to have to get more brave and more patient. Failed sites used to be scarce around here.  Yet recently, there have been a few stubborn highs which have quickly resolved themselves with a new site. Nobody here is going to be happy about the change. My daughter is familiar with how the sites feel going into her favorite spots, and how they feel under her clothes.  I've become confident inserting the sites in these locations too.  Those new angles and new topographies make me nervous.

So how do we move forward with this?

I started here, writing about it, to sell the idea to myself.  I need to be positive and convinced it's what we have to do.  Then I need to sell it to my daughter.  What route to choose?

There's the laying out the facts route:  You're having high blood sugars.  They're not healthy.  We need to try some new spots and see if that helps.  You know - the ones the doctor always suggests as alternatives? When he talks about scar tissue?  We need to start using them.

There's the buy-in route:  We have to chose some new spots.  I will allow you to choose what new spots.  I will make sure we have plenty of time for each site change so that you can take your time choosing, and so that there is no hurry to insert it before you feel ready.

Lastly, there's the reward route:   Currently, she gets a 'prize' for every 3 site changes without excessive drama.  Perhaps now there's something in it for her every site successfully inserted in a new spot.  Or maybe a bigger reward for a week or two of success.  Or both.

It will need to be a combination of all three, I'm sure.  She needs to know why: the facts part.  She needs to have some control over the situation.  Getting to choose which fresh spot gets the jab seems like the least I can offer.  Upping the ante on the reward part will hopefully be the bit that closes the deal.  I'll stock up on tic-tacs and hair accessories to be doled out for each success, and probably throw in a mother-daughter frozen yogurt outing if (when) we make it through 3 or 4 rounds of this.  I'll deserve a reward too, after all.


Yes, it's after Thanksgiving, but that doesn't mean thankfulness has to end.  Diabetes-wise, I am of course thankful for insulin, technology, good medical care, health insurance, and living in a country where these things are accessible to me.  On a daily basis, though, I tend to think smaller.  Below are a few little diabetes things which have made me happy this month:

My daughter got a cute postcard from the World Diabetes Day Postcard Exchange.

We discovered an awful looking site which must have just gone bad.  Seeing the problem early on allowed us to better manage the ensuing blood sugar spike.

Despite some highs and lows during the day, my daughter has been waking up in the low 100's pretty consistently of late.  Starting the day there provides hope for the subsequent hours.

A great technician drew my daughter's blood at the lab 2 weeks ago. He was friendly and kind. He was also efficient and incredibly skilled at finding a vein.

Texting pictures of plates of food was very successful.  As a bonus, it's fun to consider the bizarre museum display we could create with them some day.

The green pump still surprises me with its lack of pinkness.

We had the knowledge and the equipment to allow my daughter to enjoy everything on the table on Thanksgiving day.

Diabetes often leaves us little to be thankful for.  People with diabetes and their families have a lot on their plates.  Worry, exhaustion, physical discomfort in many forms, financial burdens, frustration and much more come into play on a daily basis.  It's a worthwhile survival tactic to rejoice in the little bits of diabetes happiness which come our way.

Text Me A Picture

Today we're trying a new tactic in diabetes management.

There's a Thanksgiving feast at school today.  In elementary school, I always volunteered at these things.  I do enjoy being around kids, and probably would have helped at many events anyway, but the need to monitor what my daughter was eating made my attendance essential if she were to participate.  By 4th grade, she was able to handle some simple carb counting on her own, like a slice of pizza or a packaged snack.  Anything without a set portion size was, and still is, too much.

Middle school is a new world, though.  Parents are not invited in to help with class parties.  The kids are on their own.  We had to come up with a plan which would allow my daughter to participate in this event without me hovering over her.  The school nurse is a great help with many things, but can't be expected to know how to eyeball a buffet plate and pronounce the number of grams of carbohydrate on it.

Enter modern technology.  The school nurse will text me a picture of my daughter's plate.  My daughter will then call me and we will work together to tally the carbs.  I'm not sure how clear the photo will be.  Will I be able to tell if there are marshmallows in the sweet potatoes or how deep the pile of stuffing is?  The element of taste will be gone on my part too.  I'll sometimes have a bite of a pie or cranberry sauce and realize it's significantly sweeter or denser than I'd estimated.

We'll see how it all turns out.  I don't expect her to come home with a blood sugar of 130.  What I do expect is for her to come home happy.  She'll have enjoyed trying foods from other families' Thanksgiving traditions.  She'll have had a few bites of the cranberry sauce she helped prepare.  She'll have taken another small step towards diabetes independence.

Math or Guess? Some of Each.

Thanksgiving is fast approaching and a string of celebrations will follow.  It's time to dust off those carb counting books, or reacquaint yourself with your favorite nutrition info website, or download a new app.  Or probably all of the above.

While it's particularly true for this time of year, each season brings a unique set of foods which must be counted.  Every summer, I brush up on popsicles, ice cream cones and the crusty bread I like to serve with salads.  Late spring brings the start of picnic season, with its hamburger buns, pasta salads, and watermelon slices. This week, I'll be refreshing my memory on stuffing, winter squash, pumpkin pie, and cranberry bread.

I'll turn to my trusted resources - mostly Calorie King - in paper and electronic forms.  I'll read the labels on packaged items, and review the backs of my recipe cards with their penciled-in math problems from previous years.  That homework will provide the base of knowledge needed for the weeks to come.

Yet once faced with a plate of food which includes a 'spoonful' of this and a 'slice' of that, it gets complicated.  Unless the pie slices are measured with a protractor, variables have been introduced.  Unless I know what my hostess means by the 'splash of maple syrup' she added to the butternut squash, I'll need to improvise.  The unforeseen appearance of cornbread could have me suspected of inappropriate phone etiquette at the holiday table.

About a year after my daughter's diagnosis, I met with the nutritionist at our endocrinology office.  I explained that I had gotten pretty good at reading labels and was learning to do the math on favorite family recipes.  "But how will I ever figure out how many carbs are in the scoop of mashed potatoes Grandma serves her, or in the dish of ice cream that comes with her kids' meal?"

The nutritionist gave me a sheet which had to do with eyeballing portion sizes.  Specific measurements were equated with 'half a baseball' or a 'deck of cards.'  She then explained that while this might be sort of helpful, eventually I would just know.  By consistently using measuring cups and food scales at home, I would come to be able imagine how a pile of rice would fit into a measuring cup, or how the size of the diner's french fries compared to the frozen ones at home.

I have to say I doubted her,  But she was right.  Granted, sometimes the 'splash' of maple syrup turns out to be a half a cup.  Sometimes I misjudge the amount of frosting on the cupcake.  Usually, though, a combination of scientific knowledge about carbohydrates, practice with portion sizes, and intuition gives me enough information.

It allows me to make a pretty good guess.

World Diabetes Day

World Diabetes Day

Many of you already know that today, November 14th, is World Diabetes Day. 

But aside from wearing your blue and seeing an extra news piece about diabetes, what do you know about this occasion?

Why November 14th? 
It's Frederick Banting's birthday!  Mr. Banting, along with Charles Best, is credited with the discovery of insulin.  We're honoring his work.

Where is it commemorated? 
When we participate in World Diabetes day, we join with over 160 nations and territories.

Who sponsors it? 
The International Diabetes Foundation coordinates worldwide efforts for awareness.

Why the blue circle? 
It was adopted as the day's symbol in 2007 when the United Nations passed its World Diabetes Day Resolution.  The circle represents worldwide unity in the fight against diabetes.  The blue is both the color of the United Nations flag, and also represents the blue sky under which the worldwide diabetes community stands together.

How do people commemorate World Diabetes Day? 
Health fairs are held in places around the world, from Chicago to Ghana; Jordan to Peru. Schools and businesses hold poster contests, walks, and healthy living presentations.  Famous places previously lit in blue include portions of the Great Wall of China, the statue of Christ the Redeemer in Brazil, the CN tower in Toronto, and the statue of the Little Mermaid in Copenhagen. Human blue circles are formed. 

Perhaps most uniquely, there will be a horse jumping competition near Warsaw, Poland called 'together we overcome obstacles.'  Horses dressed in blue and white saddle pads with blue ribboned riders will compete while spectators are offered a wealth of diabetes information as well as free pony rides.  For so many reasons, I wish I could be there.

So What?
For those of us who live with diabetes in our homes, every day is diabetes day, and every day is a good opportunity to raise awareness.  Yet for me, it's encouraging to know that on this day there are people gathered across the globe raising awareness about diabetes.  The diabetes community goes beyond my personal relationships, beyond people I follow online, beyond those I encounter at the doctor's office.  The diabetes community is an enormous worldwide group of people.  We're all in this together.

All of the above information about World Diabetes Day and much more can be found on the International Diabetes Foundation website, including some really great photos blue monuments.

Or Sort-Of Green

If you look back at yesterday's post, you'll see pictures of the unwrapping of my daughter's new pump.  The excitement was akin to Christmas morning, with bubble wrap flying and packaging strewn around the living room.  The shiny new pump, with no scratches or faded buttons was exciting to discover.  Most importantly, it was green!

It's packaging, however...not so much.  Strikingly out of proportion to its contents, it reminded me of a girl scout project our troop did last year in which they each had to bring in an example of excessive packaging. 

Granted, I'll take it all apart, recycle the cardboard, paper, and what plastic our town will collect.  The school librarian just asked for boxes, so I'll send that in for re-use. Yet, as my girl scouts learned, not using the materials at all is even better than recycling them responsibly.

It's part of a lingering concern I have.  The amount of trash diabetes generates in our household is enormous.  Infusion sets and their big plastic inserters, cartridges, tubing, wipes and their wrappers, lancets and their caps, test strips and their containers, insulin bottles, juice boxes, and the packages all of these things come in need to be disposed of.  Very little of this is recyclable, particularly because so much of it is medical waste. 

I hear Omnipod has program to return and recycle old pods, which is great.  I hope other companies will find ways to follow suit.  Until then, there are occasional ways to repurpose things. I've heard of people using their old insulin tubing to tie up their tomato plants.  When my daughter was little and had a play kitchen, we turned test strip vials into spice containers.  Her creations were extremely flavorful. Last spring, she used lancet caps as eyeballs for a school project.  Every package I send goes off in a pump supply box.

Obviously, the value of these supplies to my daughter's health unquestionably outweighs the environmental concern.  Therefore it becomes a matter of finding ways to dispose of them or repurpose them as best we can. Meanwhile, we can ask our supply companies to keep looking for packaging that's a bit...greener.


It's Green!

The waranty had expired and it was time to get a new pump.  Sticking with our previous make and model was an easy decision.  Both the features and the service we've gotten with Animas have been outstanding.  The tough choice was the color.  The last one was pink.  Pink again?  Silver? Black? Blue?  In light of the lack of purple or orange, the choice was easy:



Blue Fridays!

It's Diabetes Awareness month.  One of the simplest things we can do is to wear blue every Friday, and also on World Diabetes Day, November 14th.

You can find out more about this initiative, and upload a picture of yourself wearing your blue, on the Blue Fridays Facebook Page.

Wearing blue creates the opportunity to initiate conversation about the issues diabetes poses in our lives.  It also creates a sense of solidarity. 

Wear your blue this month to show that we're all in this together.


As I watch the snow begin to fall on our already beleagured neck of the woods, I'm headed downstairs to dig out the snow shovels and boots.  A crock-pot of stew is bubbling, and we're trying to reconcile our quick transition from hurricane season to snow season.  In case you too are engaged in a sudden search for your sleds and snow pants, I thought I'd reprise a post from last winter:

There's been no sledding yet, but in winters past, it's been our nemesis. The initial experience of being very cold, combined with the thrill of the hill causes an adrenaline rush for my child. Her body is fighting off the chill and the fear. Her blood sugar skyrockets. Then, usually suddenly, her body realizes that she's just spent an hour repeatedly climbing a hill. Were there a life-sized graph of this decline, it would be the best sledding hill ever.

I periodically dig the meter out of my inside coat pocket, where I've (hopefully) stashed it to prevent the "I'm frozen" error message. We test and correct, or treat with something unfreezable like glucose tabs or smarties, and she's off again.

I can't really figure out a better way to manage this situation. Upping the insulin prior to sledding would, I think, just exacerbate the low later on. Testing more often is always a great diabetes management tool. But testing while sledding is near impossible. The mittens, the snow, the wind, the lack of anywhere to put anything down, the numb fingers and their related bloodlessness all combine for an unpleasant five minute ordeal.

So, if we get any significant snow here, we'll need to pack up the meter and the smarties (along with the sled), and head for the nearest hill. We'll manage the diabetes the best we can. I'll stand at the top of the hill, and each time she appears, I'll say, "feeling ok?" or "need to check?" Eventually, I'll force her to stop. She'll be high and correct about half of it. Twenty minutes later, she'll be low and have smarties. We'll bring enough to share with her friends.

Sledding is a rare treat, and in my opinion, we do the best we can while being practical. If she decides to join the Olympic luge team, we'll need to come up with something better.

When my daughter returns home today from what could turn out to be her only full day of school this week, some hot chocolate will be in order for both of us, I think.  And perhaps tomorrow, she'll sled before it melts into a slushy, muddy mess!


No...this post isn't late.  It's only the day after Halloween at our house.  Our sense of time and connection to the rest of the world continues to be altered a bit from the after-effects of Sandy.

Glad for the opportunity to trick or treat, my daughter the witch met up with a blue and green striped monster and a werewolf for a some fun last night.

As is our tradition, we came home and sorted the winnings into four piles:

From left to right, we begin with the dish of candy to keep and enjoy over the next week.  Next is the container of fast-acting carbs like smarties, sweet tarts and nerds.  Third is the container of pretzels and chips, great to throw in the lunch box or to snack on.  Last is the bag from which my husband and I will pull a few favorites before the rest gets donated.

I often get asked if Halloween is hard for my child because of diabetes.  I usually have two answers.  First, I clarify that she can enjoy candy in moderation.  Then I talk about all of the other fun aspects of Halloween like costumes, pumpkins, being a little spooked, enjoying friends, and walking around after dark.  Last night, we walked around a neighborhood which had only had power back for about 24 hours.  People were so happy to have the kids come by and to catch up with their neighbors. Doing something so fun and frivolous after the week we'd had made this Halloween extra special.


Go Bag

Sandy is the first storm for which we've packed a full diabetes 'go bag.' 

There is always a plastic shoe box on my daughter's closet shelf with batteries, three of four vials of strips, some syringes, and a couple of site change sets.  It also has a spare meter and some glucose tabs.  It's our travel box for weekends at Grandma and Grandpa's or our starter kit for vacation packing.  I think of it as what we would grab should we need to evacuate.

Yet as I began to contemplate the possibility of an actual emergency, I realized some things needed to be added to tide us over:

A flashlight

Juice boxes

A big jar of glucose tabs

At least 2 weeks of site change supplies, strips, lancets

Alcohol wipes to sterilize things if we had to


I also realized that once the hint of an emergency is on its way, we should get this kit out of the closet and put it somewhere handy.  Last week, we put the plastic box into the ironic 'JDRF Walk To Cure Diabetes' bag, adding the aforementioned items.  We also added our every-day insulin and  long-acting back up insulin, as well as the spare supplies we keep in my purse, my daughter's backpack, and elsewhere around the house. 

Once gas is easier to come by and Target doesn't seem like a far-off land, I'll head over to get a larger container so that this discombobulated bag of diabetes paraphernalia can be organized and water-proof.

Meanwhile, I'm grateful that I was able to unpack a few things from it this morning and return it to its shelf.  


It's all a blur.

Today's my first day this week back on the internet, catching up on the non-storm related events of the past week. 

Apparently Halloween happened.  I've seen lots of facebook pictures of friends' kids in cute costumes.

It seems the candidates are still campaigning for an election next week.  There are contingencies for me to vote in a national guard truck of some kind, which could be interesting.

There's also the matter of Diabetes Awareness Month beginning yesterday.  I think last year I posted every weekday in November.   Perhaps that will seem more realistic next week.

Meanwhile, we are happy for home and family.  We're relishing the resumption of all of our utilities.  The fact that we still have half a tank of gas and a running refrigerator with food to prepare puts us miles ahead of half our town and most of our surrounding geography.  We're enjoying unusual amounts of company with neighbors taking us up on our offers of heat and electricity. 

Next week we begin anew. Halloween might be on Monday.  Power will continue to be slowly restored and trees removed from our town.  School, work, and blogging will take on relevance for our family once more.

Meanwhile, we'll celebrate all that we have and seek more ways to help those who have lost so much.  It's my hope that you will do the same.

Insanity 2

Last week, I complained a bit about how in the diabetes world, A + B does not always = C.  Mysterious things happen for what appears to be no apparent reason.  Sometimes in retrospect, we can look back and realize the cause: an impending illness or growth spurt.  Sometimes we'll never know.

We're forced address these issues with whatever information is at hand, even if it is insufficient.

Today, for example, my daughter called at lunchtime (still 10:17 a.m.).  Her blood sugar was 97, but she said she felt like she was dropping.  I suggested she eat first and bolus later, subtracting a few carbs when the time came.  Forty minutes later she called back.  She still felt low so tested before bolusing. She had eaten 51 grams of carbohydrate and now had a blood sugar of 81.

What did I think she should do?

I had no idea what she should do.  Yet I had to come up with a plan for her so she could move on to her social studies quiz. 

Once again, I was faced with solving a medically critical math and logic problem while missing a significant amount of critical information.  My tactic was to err on the side of caution. I heard clearly in my daughter's voice that she felt low and that it was unsettling.  I also reasoned that she could test and correct a resulting high blood sugar before it became astronomical, but that a low blood sugar during the variety of tests and quizzes scheduled for the afternoon would be more problematic.

"Bolus half the carbs. Check in 20 minutes to make sure you're coming up. Or sooner if you feel worse."

It turned out o.k. In 20 minutes she was headed up. She was 180 at 2, and 144 when she got home.

I guess I did the right thing.  I just don't know how.  And I don't know why I had to do it in the first place.

Big Blue Crash

We'd just finished a big family dinner which included a very rich dessert.  There was fun music on.  The grown-ups were washing the dishes. 

"I should do the Big Blue Test," my daughter said.

The Big Blue Test is described on its website as follows:

The Big Blue Test is a program of the Diabetes Hands Foundation that encourages people with diabetes to test their blood sugar, exercise for 14-20 minutes, test again and share their experience on BigBlueTest.org. For every test, people with diabetes in need receive life-saving supplies through Big Blue Test grants that are awarded to humanitarian diabetes charities in the US and around the world, made possible thanks to the program sponsor.

In 2012, Roche Diabetes Care, makers of ACCU-CHEK® diabetes products and services, sponsors Big Blue Test once again, to help us touch even more lives. Be part of the 20,000 people who will do the Big Blue Test this year.

Some good exercise for a good cause sounded like a win-win situation.

"O.K.  You've got to check first and after."

She checked.  "I'm 123." 

That seemed a little odd after the big meal we'd just finished, but I figured she was on her way up.  She went off to have her own little dance party in the living room.  The kitchen timer was set.

Fourteen minutes later, the dishes were about done.  She checked again.  "I'm 48."  Juice was administered and the numbers were logged in to the Big Blue Test website. 

She came up very slowly.  Ten minutes later, she was 58.  More juice.  Ten more minutes.  71.  More juice.  Were we overdoing it?   Perhaps, but bedtime was nearing and I preferred to give a little extra juice and correct later, than to wake her up in an hour. 

An hour after starting to dance, she was back up to 102 and ready to get tucked in.  Later checks reassured us the numbers had evened out.

We proved the Big Blue Test's premise that exercise lowers one's blood sugar.  More importantly, by submitting our results we generated a donation to help people with diabetes here and around the world. 

We'll do it as many times as we can between now and its conclusion on November 14th, World Diabetes Day.  I encourage you to do so as well.  Our participation will help generate funds for some fabulous programs.  And focusing on the effect of exercise on blood sugar might give us some helpful insights as well.

To participate, visit www.bigbluetest.org.

Walking to Cure Diabetes

Our little family walk team participated in the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes this weekend.

This was our 9th annual walk.  I suppose it was the 6th or 7th year my daughter walked, having the advantage of a stroller or a wagon for the first few years. 

Our first JDRF walk was about 10 months after my daughter's diagnosis.  We chose a walk in a big city.  Despite the pouring rain and the screaming toddler who clearly thought we were torturing her, it was transformational experience.  We had found a local support group near our home for parents with Type 1 kids, so were fortunate not to be as isolated as some families are after diagnosis.  Yet at this walk, there were several thousand people gathered with the common purpose of finding a cure for this maddening disease we had found ourselves living with.  As we walked, there were people as far as I could see, all of whom were walking 3 miles in the pouring rain because they cared so deeply about a cure.  To this day when I feel beaten down by this disease, I bring that image to mind.

We've walked in several places since then, and I was even part of a walk committee for a small event near our old home.  Each year brings its own meaning.  Sometimes we're bouyed by the  supportiveness of the friends and family who walk with us, or by the notes they send with their donations.  Other years, we're moved by something that's said at the walk kick-off ceremony or in conversation with others attending.  This year my daughter's continued expression of how excited she was to participate drove our enthusiasm.

Every year, though, we set out amongst a sea of people all of whom are walking with great purpose towards the same goal.

A cure.


Albert Einstein is said to have defined insanity as  "doing the same thing over and over again and expecting different results."  Those of us in the diabetes community would twist his words a bit. 

To go truly insane, try doing the same thing over and over again and getting completely different results.

Every Thursday for three years now, my daughter has taken a ballet class at 5 p.m.  The class is the same length and includes a similar combination of exercises each week, in about the same order.  The degree of difficulty has increased over the years, but more in terms of balance and flexibility than intensity of exercise. 

Every Thursday she has an after school snack around 3 or 3:30 and save the occasional outlier, begins the class with a blood sugar in the mid-100's.  We go for stretches where that blood sugar holds nicely through the class, with a slight decline of maybe 20-30 points, but nothing significant. 

Then for no apparent reason, the class starts to tank her.  Last week, I thought it was the new site.  The week before I thought was a fluke.  Three weeks in a row seem to point to a new pattern.

She started yesterday's class with a blood sugar of 120.  For a little insurance, she chomped a glucose tab before she headed in the door.  A little snack might have been preferable, but none was at hand. She finished the class at 49.  She'll need a temporary basal rate and/or a semi-substantial snack next week before she begins dancing. 

This has happened before with ballet. We change our pre-class diabetes routine and it works for a few weeks or a couple of months. Then suddenly the numbers will start to creep up during class instead of down.  We'll stop the temp basal or the pre-class snack again, and she'll begin to come out even. 

When I create my revolutionary giant spreadsheet of all possible blood sugars cross-referenced by all possible physiological and environmental factors, cross-referenced by daily routine, I might find an answer.  I could find this issue correlates with growth spurts, a concurrent preference for eating apples, the atmospheric conditions, or when the site was last changed.  It seems just as likely I'd find no cause at all.

It's one of those many diabetes situations to which all I can do is react.  We'll put the stop-gap measures in place which are necessary to keep her safe, and keep checking to see if they've worked. It's a most maddening aspect of this disease.  A + B doesn't always = C.  And the factor which led to a different outcome is often a mystery.

As we left the dance school yesterday, my daughter lamented the situation, but for different reasons.  "I like it best when I'm 75 or 80 when we leave.  Then I can take one of the lollipops from the front desk for the ride home."  A worthy goal for next week, indeed.

The Sleepover

The possibility had been brewing for a while.  A sleepover.  At somebody else's house.  It sounded luxurious and terrifying all at the same time.

At the end of the summer, we made it happen.  As part of a friend's birthday weekend, she wanted my daughter to stay overnight at her house.  Could she?  A few factors made us say yes.

1. Of all of my daughter's friends, this one lives closest: one block away.  In case of emergency, we could be there in a flash.  And in terms of every-kid issues, cold feet at bedtime would require only a very quick trip to retrieve her.

2. We've known this family since long before my daughter was born.  They know her well.  She's comfortable in their home. They know the questions to ask before she visits for a meal.  They're comfortable with her diabetes routine.  They wouldn't hesitate to call us at any time for any concern.

3. We'd been thinking about this possibility for a long time.  By 5th grade, most kids have slept over at somebody's house.  We couldn't hold her off forever.  So I had a game plan in my head which we were able to implement.

How did we do it?

I brought her over at 5:30 and spent 20 minutes in the kitchen going over the dinner, dessert and breakfast menu.  I made copious notes for my daughter on portion sizes and carb counts.  Then I kissed her goodnight.

As is the way of diabetes karma, it had been a day of wild blood sugar numbers.  My game plan was to set her up for a bedtime blood sugar in the high 100's so we wouldn't have to worry about the lack of a 2 a.m. blood sugar check, but at this point we were reduced to troubleshooting. She had strict instructions to text us with each check so we could help her address any more outliers.  Or so we could rest easier knowing things were evening out.

Neither girl was one for staying up until all hours, so at 10:30, I got a text. 'Bedtime.  BG is 110.'  Ordinarily, that would be good news, but with no middle of the night check in the works, I had her consume about 15 carbs before going to sleep.  Not ideal diabetes management, but the alternative of walking a block up the hill at 2 a.m. and breaking an entering seemed less desirable, so it's what we did.

She woke up early, as she tends to do.  I was already wide awake, willing my phone to chime, when she texted me at 6:45.  Her blood sugar was 180, and she was reading her book until her friend woke up.  She was o.k.

The luxurious parts of the night were fun. My husband and I enjoyed a leisurely dinner, with wine we'd been saving for a special occasion. It was a gorgeous night to sit in the back yard. It felt very strange to be left home alone. But it was a long night, hard to completely enjoy with a cell phone clenched in one hand at all times. I can't say I slept well. Once I heard from her in the morning, I was able to relax a little to enjoy my coffee and newspaper in peace.

My daughter had a great time, and wants to sleep at other friends' houses now. The second sleepover is coming up in a couple of weeks, at another old and trusted friend's. I'm the weird mom who hopes they stay up late.  I'd love a text of a perfect midnight blood sugar.  Sleep would come easier then.

What Happened?

The call from the nurse's office at 2 p.m. started the mysterious chain of events:

My daughter's blood sugar was 70 after gym, having started at 208 with no insulin given for a correction.  I suggested eating her 15 g. snack and checking again before walking home.

At 3, it was up to 294...an extreme jump.  Uncertain of the cause of this high, and factoring in the coming walk home, I advised giving a little over half the correction.

After a 15 minute walk, she arrived home with a blood sugar of 358.

We made a site change the first order of business.  The cannula area appeared dark red and somewhat crusty.  I'd never seen one quite like it.  When I pulled it, it turned into a gusher.  It required a clever yoga move by my daughter to get her site area above her heart, but this basic first aid tactic did stop the bleeding and allow us to continue.

New site nicely inserted,  I determined that this grusome looking site had simply conked out, causing all of these blood sugar issues. I delivered a hearty correction for the 358 plus a few goldfish crackers. 

My daughter was able to move on to homework, but we lost a precious 20 minutes of our busy Thursday afternoon to diabetes troubleshooting.  Math homework was done in the car on the way to ballet.  Typing of the short story would have to be finished after ballet and dinner, in lieu of watching the baseball playoffs. Very sad.

About 40 minutes into the ballet class, she was next to me on the bench outside her studio.  "I need to check."  She was 49. 

"I guess the new site works," I muttered, shoving the straw into the juice box.  She sat and slurped.  She valiantly returned to her class and participated, resting on the window ledge between exercises.

What happened?  I wish I knew.  There are several possible scenarios:

The site was obviously shot, but maybe not as completely as it looked. Perhaps there was more insulin on board than I assumed when I gave the correction?

Maybe some of the high was from the bad site, but some was from another cause.  Perhaps she was lower than 70 sometime during gym and had a rebound reaction?  Gym or a math quiz might have prompted an adrenaline rush which spiked her blood sugar?  In either case, it would have been prudent to be more careful with the correction.

Maybe our correction factor is way off for that time of day?

Trying to complete a complicated math and logic problem with about half the possible information is nearly impossible.  If we're lucky, we guess the missing information correctly and solve it accurately.  Just as often, we'll guess wrong and have to hope that missing a little bit of ballet class is the worst outcome we'll see.


The phone rang at 10:45 a.m., flashing the school's number on the caller i.d.  It's always with a sense of dread that I answer calls from school.  But, of course, I do.


"Yes...hi."  (Who else would be answering?)

"I finished my whole lunch."  (Brunch?)

"O.k.  Good?"  (I was struggling to get the tone.  Was this good news or bad?)

"I'm still hungry.  And the nurse has some pretzels I can have.  But I'm not sure I can finish the whole bag.  And I don't know whether to eat the sticks or the twists. But I'm really hungry.  And I have art club after school that I want to stay for. And then I'll be really, really hungry."

I cut her off before she got too worked up, "O.k.  Look at the label for the twists...they're probably easier to count than the sticks.  How many carbs in a bag?"


"How many pretzels are in there...open it up and count as best as you can."

"Looks like about 20."

"Ok...well take them and eat what you can and come back and bolus 1 for every pretzel. That should be close enough."


"I'm glad you're hungry!  And make sure you say thank you for the pretzels."


At 11:20, the phone rang again.  School.  "Mrs. Osborne, everything's ok. In fact, I thought I'd call with good news for a change...she finished the pretzels.  I'm so glad she's getting her appetite back."

Me too.  And thankful for the nurse's support, and for how nice her friends have been keeping her company on her many treks to the nurse's office during these first weeks of school.

My wish to provide a balanced brunch snack-like meal which can fill her up is complicated by her aversion to 'cold cheese,' and her wanting to lunch with three friends who are allergic to peanuts. This week we're trying yogurt tube + grapes + crackers or pretzels.  I still contend the cafeteria should serve eggs and toast. 


Walking For A Cure: My Daughter's Letter

Dear Friends and Family,

On Saturday morning, October 20th, my family will be participating in the JDRF Walk To Cure Diabetes.  The Juvenile Diabetes Research Foundation funds research towards better treatments and towards a cure for people with Type 1 Diabetes.

Lots of things in life are hard when you have diabetes. Here are my top 10 reasons why I want to get rid of it:

1.       I have to visit the nurse at school all the time.

2.       I have to carry around all my supplies everywhere I go.

3.       I can only eat candy on special occasions or when I’m low.

4.       When I’m eating, I have to keep track of all the food I eat so we can bolus insulin for it.

5.       I can only drink juice when I am low.

6.       I have to be cautious about what I do and when.

7.       Sometimes I can’t do things other kids can because of my blood sugar.

8.       I know that lots of other people around the world are going through the same thing I am, and I want them to know they are being thought about and cared about.

9.       Lots of people don’t understand what many people all over the world are going through.

10.   Some people don’t really think about all the people all around the world and don’t realize that donating to the cause (JDRF) could help find a cure!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If you’d like to walk with us, let us know.  It would be fun to have some friends there with us.

If you’re able to donate to our team, you can do that too!  Just click here.

Thank You,

 (My Anonymous Daughter)

Diagnosed with Type 1 Diabetes on 12/21/02, when I was 13 months old

504 Resources

Last week I met with our school's 504 team and finalized my daughter's plan for this year.  In the past these meetings were somewhat routine.  Going into a new school, with a more complicated schedule and a whole new cast of characters, I felt it important to do my homework and enter the process prepared.

Below are a few resources which might be helpful to parents who are entering the 504 process for the first time, or who are looking to make some significant changes or updates to one which is in place:

The American Diabetes Association has a Safe At School campaign.  This includes a publication which they will send to you and/or your school.  It provides comprehensive information about all kinds of diabetes issues which could arise and ways to handle them.  The Safe At School section of the website provides links to additional staff training resources as well as sample 504 plans, and good advice about working with staff to obtain the best support for your child at school.  There is also a very thorough section on legal resources.  It explains channels through which to proceed should you be unable to secure a 504 plan for your child, or secure the reasonable accommodations you wish to have in there.  Also helpful is a directory of applicable state laws which relate to diabetes in school.

The Juvenile Diabetes Research Foundation puts out a 'School Advisory Toolkit'.  It comes as a hard copy from your local chapter, or is easily requested to download yourself.  It contains an overview of the 504 laws and practical information to help put one in place at your school for your child.  There are helpful samples of 504 accommodations as well as sample forms for different circumstances, such as one for a teacher to leave for substitutes.

Both ADA and JDRF have helpful back to school webcasts which can be viewed anytime through their websites.

Children With Diabetes has a page on Diabetes At School.  It contains links to a multitude of resources.  These include sample plans and forms, legal information, SAT testing rules and advice, and links to a variety of publications and websites which also deal with this issue.  Unique to Children With Diabetes is the opportunity to look at past polls, message board conversations and ask the expert results around this issue.  Reading how real-life situations have been resolved can be helpful in brainstorming solutions for your own.

A common theme throughout these resources bears repeating and emphasizing. Taking the time to make sure school staff understand a bit about Type 1 Diabetes will go a long way.  Educate staff about the effects and dangers of high and low blood sugars and the process of keeping them at bay. Explain, with examples if you possibly can, how diabetes has affected your child's school day in the past.  Use this information as the basis for making your requests regarding how your child's diabetes is handled at school.

Our 504 process ended with a mutually agreeable plan.  More importantly, it ended with our school's staff having a better understanding of Type 1 Diabetes.  Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education. 

No D Day...Ha!

George over at Ninjabetic organized yesterday's 'No D Day' event.   Diabetes bloggers were, for a day, to imagine that diabetes was not in the picture and to write about something else dear to their hearts.  The latter was accomplished.  The part about imagining there was no diabetes...no such luck.

It was a diabetes-heavy day.   The school guidance counselor was busy pulling out my daughter's 504 plan.  The e-mail came mid-morning, requesting a meeting this week to review its contents.  This was followed by a flurry of activity. The meeting was set up.  I dug out last year's version for review.  I spent time on the phone with another diabetes mom from the school, comparing notes.  I carefully considered both independently and with my daughter what needed to be changed in this year's plan.

As I was out photographing my zinnias, the phone rang.  A pseudo-low blood sugar had sidetracked my daughter on the way to lunch.  What was my opinion on treating it?  A burst of diabetes-math resulted in a solution.

Envisioning the busy week stretching ahead of us, it became clear that our annual JDRF walk letter needed to be worked on yesterday as well.  My daughter and I collaborated on it after school.  Some serious diabetes conversation ensued, followed by a site change. 

I love the concept of No D Day.  It reminds us that we are multi-faceted people, with wide ranging interests.  It reminds us of our hope for future days and years and lifetimes without diabetes.

Until then, it's always there, and it's rarely up to us when it will demand our full attention. Meanwhile, I'll settle for laughing at the irony of its intrusion on my No D Day, and go outside to weed my flower garden.

Amateur Gardening

In my spare time, I fancy myself a gardener.  In my imagination, I can create gardens to compete with Monet's at Giverny or those at Hampton Court Palace.  In reality, I'm thrilled when plants survive the combination of harsh conditions and lack of attention to which I subject them.  This season's successes are pictured below:

I had never heard of gazania before I bought a three pack at our local garden center the first year we were in this house.  I bought them solely because I liked how they looked, but they're fabulous in a multi-purpose way. They are one of the few plants which seem to thrive on the south facing desert-like conditions of this front garden.  This year, I filled the space with them, in a variety of cheerful colors.

These roses love it here, which is great since I do very little to nurture them except spray them to keep the deer from eating them.  Right in front of the huge bay window.  They very boldly and carefully eat the leaves and leave the stems and thorns.

The zinnias seeded themselves from last year and developed into this enormous clump of orange flowers encroaching on my front walkway.  I'm afraid that if I tried to move them, I'd kill them.  Fortunately that's not a purple mum they're sharing space with.

Next year we plan to add a vegetable garden out back, and I'm looking forward to growing some green beans, cucumbers and lots of fresh herbs. We'll then cultivate not only beauty for our eyes, but salad as well!  What better therapy than creating order out of chaos by weeding and designing a garden? 
Want to see more entries or join in the fun of no-d day?  Click here:


Most stories posted here and titled 'sick' would describe a home littered with test strips.  They would include details about ketones and wild blood sugar fluctuations.  

This story has a different angle.  I am the one who's sick.  This is day 4 of the illness, and I've decided it's likely I'll survive it.  The doctor visit confirmed it's 'just a virus,' but it's the worst I've felt in a long time. 

I've spent three days managing the activity of my household from one corner of the sofa.  I am surrounded by tissues, drinks, phones, reading material and the remote.  Yesterday, I managed to take my daughter to ballet class after school. Upon returning home I felt as though I'd run a marathon.

Unable to muster the energy for much thought, let alone activity, it's been necessary to prioritize. Despite sore throat and cold medicine induced delirium, there were still balanced meals to be made, carbs to be counted, sites to be changed, and blood sugars to be carefully considered.  Unlike the rest of my daily activities, this part could not stop for a couple of days until I felt better.

My daughter has been an enormously good sport.  While we usually share responsibility for making breakfast and packing lunch, and for managing the diabetes aspects of snacks and meals, she's taken most if it on herself.  She'll go out to the kitchen and count out her snack, appearing at my sofa-nest to confirm her bolus before giving it. She's been helpful with meal preparation and with responsibly testing her blood sugar and adding her carbs before eating.  Yet the questionable blood sugars were mine to decide how to treat, and site change had to be done.

It doesn't stop, this diabetes stuff.  So hopefully this illness will, so I can get back to my pancreas duties and my daughter can get back to being a kid.

Diabetes Art Day

The blue circle is the symbol for World Diabetes Day.

The logo was created in 2007 to mark the passage of the United Nations World Diabetes Day resolution.  It symbolizes the unity of all people of the world, under one blue sky, to conquer diabetes.
This art was created by my daughter with cardboard, marker,crayon and test strips for:

Diabetes Art Day

Early Reviews Are In

You may recall that we had a surprise when we opened our packet of information from the middle school.  We learned that although we had met and liked the nurse in June, she had moved on. We would soon become acquainted with Mrs. Not-the-one-you-met-in-June

We stopped by a few days before school started.  My daughter proudly navigated our journey to the nurse's office where we met the new nurse.  We reviewed my daughter's medical plan and her schedule.  My daughter showed  how she checked her blood sugar and programmed her pump.  I provided an index card with every bit of contact information for myself and my husband and encouraged its use for any question, no matter how small.  We left feeling comfortable.

Due to her nervous stomach as school has begun, my daughter has gotten to spend even more time than usual in the nurse's office.  Throwing up in someone's wastebasket is a quick way to develop a unique and lasting bond.  Whatever the reasons to get to know eachother, my daughter and the nurse are getting along.  Things are going smoothly, diabetes-wise.

"All my stuff is where I can reach it, so I just go right in and check and show her what I am and how much I'm giving."  The perfect balance of support and independence.

My daughter may pick up the phone and call me if she's uncertain about something.  The nurse will do the same, asking good questions. 

Most importantly, though, "she's nice."  The minutes spent there waiting for juice to kick in, or for her stomach to settle down, have been pleasant and calming. 

We're fortunate to be at a point in our diabetes journey where my daughter is fairly independent in the basic tasks of her care.  She doesn't need a CDE or other accredited diabetes expert to manage her care at school.  It's important that there is someone who can handle her diabetes if she becomes unable to do so herself due to a low blood sugar.  She needs someone available who can intelligently walk her through any unusual diabetes circumstances.

On a regular day, though, she simply needs someone she's comfortable visiting 2-4 times a day and who can tell her a good story while she waits for her blood sugar to rise.

So far, so good.

Fun and Functional

Re-purposing a tic-tac box for used test strips keeps (most of) them out of the bottom of the bag!

Until about a month ago, we carried our diabetes supplies in their original containers.  The  meter, lancet and strips went in the meter case, with bits of tissue and a roll of smarties.  Then there was a container of glucose tabs.  And a juice box.  And a separate bag with glucagon, a syringe, spare strips, spare batteries and more smarties.

It took us almost 10 years, but we finally realized there was a better choice.  I invested all of about $10 in this cheerful little make-up case from Target, and now it's all together.

We were inspired by a friend who re-purposed a cute pencil case for her supplies.  Why not keep these things we use so many times per day in something more fun than a black case?

We were also inspired by a greater need to keep all of these items in one place.  It is increasingly common for my daughter to go places without me and my giant purse.  She now does not need to rummage through the giant purse for the odds and ends of diabetes care, transferring them to a giant tote bag of her own.  They are now all together in this handy bag for her to grab and go.  We even chose this design over the flowery one so my husband could carry it more proudly for the walk to the library or around the park. 

A great improvement in the fun and functionality of daily diabetes drudgery.  For only $10!

This post is my September entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/september-dsma-blog-carnival-2/

Wishing For Invisibility

What middle schooler hasn't wished to be invisible?  The reasons are too numerous to count:


Bad Haircuts


Mean kids

Forgotten homework

Sports blunders

Social faux-pas

Being in public with one's parents


Wait...that last one is invisible.  Sort-of.  Which is good.  Sometimes.

With her insulin pump in her pocket and her supplies stashed away, nobody knows my child has diabetes.  Until she disappears from the classroom every day before everyone else.  Or starts squeezing blood out of her finger at a birthday party.  Or gets all glazy eyed and starts chugging an Elmo juice box.  Then it's actually be helpful to know that she has diabetes and hasn't gone off the deep end.

She's not embarrassed about her diabetes, though she may go through a phase some day when she is.  For now, she's open to questions.  But it's not the first thing she wants people to know about her.  She'd rather talk about books or music or American Girl Dolls or the Red Sox.  She'd rather people know she's sweet and funny and smart.

Yet I suppose if the first impression was a choice between dropping all her stuff while tripping up the steps at the new school, or being seen testing her blood sugar on those same steps, she'd choose the latter.

Would you?

This week is invisible illness awareness week.  More information and the opportunity to link your own post can be found here.


The fifth grade eats lunch at 10:17 a.m. 

"Most of my friends don't seem to mind," was the report.
My daughter minds.  A lot.  Because she's a normal person. 

Her response to the problem is our challenge.

The first day, she ate most of her lunch.  The second day she ended up in the nurse's office chugging a juice box since she'd bolused the carbs and then decided she couldn't finish. 

Over the weekend, the lunch issue became an all-consuming, awful problem in the way problems do best when you're in middle school.  All of the anxiety about every aspect of this new school experience was funneled into the lunch predicament and there was no possible solution.

By day three, she had herself so worked up about it that she was sick to her stomach.

Thankfully she's pumping, so we have some flexibility in eating patterns.  But from a regular-people perspective, she has to eat something between 7:40 a.m. and 2:52 p.m., and keep it down.

While she's got flexibility, she's used to eating regular meals on a regular schedule.  It's likely that while the pump allows for different mealtimes, a regular eating pattern makes it easier to keep her blood sugar more stable. Perhaps most significantly, it's her preference (which isn't really odd at all) to eat lunch at noon-ish and small snacks between meals.

Yes, she has her 504 plan which would allow her to eat anytime.  But she can't eat while practicing  the keyboard during music class.  Or while trying to do weather experiments in science.  And, along with every other middle school child, she doesn't want to be 'different' any more than she has to be.  So we seek a way to make this schedule work. 

Our next experiment is two snacks.  One at 10:17, and one at 2, when all 5th graders are allowed to snack if they need to.  A generous policy to make up for the ridiculous lunchtime.  She can then have another substantial 'snack' when she returns home.

Today the anxiety seemed to be dissipating a bit.  Yesterday she ate her two snacks and spent the whole lunch period with friends instead of the nurse.

Perhaps an omlette station in the cafeteria would help.

The 504 vs. The Details

My daughter's 504 plan works in conjunction with her medical plan sent to the school by the endocrinologist. It lays out 'accommodations' which protect her from being discriminated against because of her health, and it provides her with accommodations for situations in which her healthcare needs get in the way of her academic ones. The 504 and medical plan work together to provide information and guidelines for staff, and medical orders for the nurse to follow in assisting with her care. 

The 504 plan addresses big picture items like being allowed extra time on tests in the event of low or high blood sugar and being allowed access to water and the bathroom at any time.

At the start of the school year, though, it's the little logistical issues which require attention.  The existence of the 504 plan allows us to address these without argument, but they would seem ridiculous as bullet points on the acutal document.

  • Student may leave math textbook and snack in nurse's office to eliminate need to return to locker between gym and math.
  • Student may store chocolate covered pretzels in nurse's office in case of unexpected birthday celebration.
  • Student may check out books first during library time to allow sufficient time to check blood sugar before lunch.

We were fortunate at the elementary school to feel we really didn't need a 504 plan. It was a small school with wonderful staff who valued the individuality of each child. They would not let my daughter's diabetes come between her and a full school experience. We chose to implement the 504 in first grade not because of any concerns, but because of how well things were going. We wanted to put what was happening in writing so it would follow her through her whole school career.

It's our hope that we will feel the same at the middle school.  But it's comforting to know that, should an argument arise, there's a document to back up my daughter's right to available chocolate-covered pretzels.

Travel Trouble

A couple of weeks ago, we took our final trip of the summer.  It began with a familiar journey of four and a half hours to grandma and grandpa's house.  We would spend a night there and then travel another hour and a half with them to a cabin on a pond in the woods.  We make this trip once or twice each summer, and I mistakenly believed I could easily pack what we needed without the extra concentration required for, say, our trip to Florida earlier in the year. 

The bad omen came three quarters of the way there, when there was a thunk and a subsequent dragging sound.  Sadly it was not from a nearby vehicle, but from our own.  The muffler had come loose and was dragging down the highway.  My husband heroically secured the muffler to the car with a bungee cord and we traveled slowly but steadily to our destination.

We enjoyed a pleasant supper and researched the hours of nearby muffler places for what we hoped would be a quick fix before continuing on our way in the morning.  The only other piece of business for the evening was a site change.  Which would require insulin.  Which I realized, with a sinking feeling, was at home, four and a half hours away. 

Hoping against hope, I peered into my in-laws' fridge. Because we visit often, we leave vials of lantus and novalog there for just such a circumstance.  Sadly, my memory was correct that the last time we visited, we discovered the insulin to be near its expiration date and brought it home to use and to replace upon our next visit. 

It was 7:45 p.m. If we wanted to enjoy the rest of our vacation, we needed a source of insulin by the time the muffler was fixed in the morning. Our other options were heading home, or visiting the local hospital by evening. 

As much as I'm a supporter of small local businesses, this night is why we use a national pharmacy chain.  The pharmacist found my daughter's name quickly in the computer system and submitted the request for a refill.  Their pharmacy would be open until 10. 

Then, "Did you just refill this prescription last week?"

"Yes, but I'm visiting family here and am 250 miles from home.  I left the insulin at home."

"I'm sorry, but it's not going through on your insurance."

"Ok...well...how much would it be out of pocket?"

"Let me see...Oh WOW...it's a lot.  It's $169."

"Hmm...that is a lot." 

Funny how fast your mind can work in these moments.  I was considering the obviously higher value of my daughter's life, but also the comparative cost of traveling back home to get the insulin and the immeasurable cost of losing out on a vacation when the pharmacist offered, "Let me call your insurance for you.  I see they're still open.  Sometimes they will override the cost in an emergency.  I'll call you back within the hour to let you know."

Twenty long minutes later, the phone rang.  Our insurance would pay for it, and it would be waiting for me to pick up in a few minutes.

Site change waited until morning, but was easily done while my husband went to the muffler shop.  We very carefully packed the rest of the insulin vial into our significantly quieter car and hit the road.  The subsequent discovery of the forgotten water toys, and the need to re-wear the same shorts a few times were issues which seemed trivial compared to the trip's beginning.

Too many people pay $169 every time they need a vial of insulin.  Lots of  people end up at the hospital because they cannot afford that $169.  Countless people have advocated for insurance companies to cover the cost of insulin, even for people dense enough to leave it at home on vacation. 

While it was a stressful start to a vacation, the experience made me grateful for what our family has, and for those who make sure we have it.  It was a reminder that there's more to do out there to ensure everyone has access to basic diabetes care.


Sugar - free cherry limeade slurpee...an excellent low-carb way to cool off on a hot summer afternoon!
Love companies that make nutrition info easy to find online.
And love friends who introduce us to fun diabetes-friendly treats.

Best Laid Plans

In September, my daughter transitions to the middle school. (A sentence which in and of itself causes alarm.)  In June, our previous school nurse was kind enough to facilitate connecting us with the middle school nurse.  We spoke a few times by phone, and at the end of the school year, my daughter and I stopped by for a reassuring visit to the nurse's office and a guided tour of the 5th grade wing of the school.  We learned that the nurse was a former pump trainer, and that there was an older girl in the school with diabetes.  We left feeling comfortable with this nurse's diabetes knowledge and, as a bonus, having enjoyed spending the hour with her.

Therefore, today's letter including the fall schedule and some other details about the 2012-13 school year literally brought tears to my daughter's eyes.  "We're pleased to welcome our new school nurse, Mrs. Not-the-one-you-met-in-june." 

Primarily, of course,  I hope all is well with the original nurse, and wish her well wherever life has taken her.

But oh, how I wish it hadn't taken her anywhere.  Selfishly, I'm upset that the time and energy I spent with her in June is lost.  More importantly, much of my child's comfort about starting this new school came from knowing the nurse understood the whole 'diabetes thing,' and that she could then focus on the rest of the new experiences of middle school.

For all we know, nurse #2 is fantastic.  For all we know, she's a Certified Diabetes Educator, or has gracefully assisted dozens of kids with diabetes through middle school, or is the kindest, smartest person in the world, just waiting to learn all there is to know about type 1 diabetes. 

My daughter's diabetes skills in terms of checking, bolusing, treating lows are good.  Professional support is important, but with the emphasis is on support.  She needs someone she's comfortable sitting with for 5 or 10 minutes after the juice box.  Someone who gets that her greatest wish is to be in and out of the nurse's office in a flash at lunchtime so she can eat with her friends.  Someone who can calmly guide her through troubleshooting a weird high or a pump alarm. Someone who she can confide in if a teacher or student gives her a hard time about diabetes stuff, and who she trusts to handle that information well.

Until my Monday phone calls are returned, though, the new nurse is an unknown.  Pit in the stomach, tears in the eyes unknown.  As with many things diabetes, just when you think you have everything figured out, it's time to start all over again.