This NPR podcast entitled, 'The Robot Vacuum Ate My Pancreas,' tells the story of Dana Lewis who invented her own artificial pancreas. Not only is it fascinating to hear that (extremely intelligent, technologically trained) people are successfully doing this, but the piece does an excellent job of explaining her motivation. A comparison of maintaining level blood sugars to trying to keep a car going exactly 70 miles an hour without cruise control was one clever example of how this piece describes the kinds of frustrations diabetes management brings.
The new Miss New Hampshire has Type 1 Diabetes and hopes use her platform to raise awareness throughout her state and during the Miss America Competition. Awareness raising is always good in my book.
There was a huge stem cell therapy conference at the Vatican last week which received press in the mainstream media. The attendees were addressed by both the Pope and Vice President Biden, along with many others. Diabetes and its community of advocates were well represented along with a multitude of other issues stem cell therapy may eventually provide help for. The conference was designed to encourage collaboration between scientists using similar technology to treat different diseases. You can sample the conference and its media coverage via the twitter feed.
Diabetes Blog Week is coming! The week runs from May 16-20th with wildcard topics for those who want to keep going into the weekend. I'm excited to respond to the prompts, and to read the thoughtful posts they're likely to evoke.
National Nurse's Day is this Friday, May 6th. Our school nurse will get a bottle of Bath and Body Works' Stress Relief Hand Sanitizer, and a card from us. Don't forget the nurses who are important to you!
In my daughter's little world this month will bring big events like the annual standardized tests, at least 4 birthday celebrations, the 8th grade semi-formal dance and an all day music field trip which includes both performance competitions and time at an amusement park. These should all prove to be incredibly exciting. Will diabetes cooperate? Stay tuned for details!
This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:
when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone
I Wish People Knew That Diabetes...
is never and never will be "under control."
stops us dead in our tracks at the most inopportune moments.
makes my daughter one of the toughest and bravest people I know.
has caused us to purchase (literally) thousands of juice boxes in the past 13 years.
means my kid has sites for two devices inserted in her body all the time.
requires my kid to experience long scary needles every other day for her sites.
has led us to meet some amazing people we would not otherwise know.
means it's been 13 years since I've slept through more than 3 nights in a row.
has no cure.
could have killed my kid if she wasn't diagnosed.
makes us do serious math every time food is served.
has led to my having closer relationships with the teachers and administrators at school.
is the reason I'm slow on the uptake some days because of a long night of highs or lows.
when graphed looks like a roller coaster; and when experienced feels like one too.
is what inspired me to start writing again.
means 15 minutes in the nurse's office a couple of times every week.
is worth advocating and fundraising about.
is why my cell phone is in my hand whenever my daughter is not in my sight.
is a diagnosis shared by some cool famous people like Nick Jonas and Sonya Sotomayor.
means that a little piece of me worries every morning about whether my child will wake up.
is a challenge shared by the family and friends of the person with diabetes.
means my kid never leaves the house without a bag full of stuff.
is a death sentence for people without access to insulin and glucometers.
is something I wish I knew much, much less about.
It's #IWishPeopleKnewThatDiabetes day- these links will take you to the I Wish People Knew That Diabetes and Diabetesaliciousness websites for more info about the day. You can also search the hashtag on twitter to see more thoughts and to add your own!
What parent hasn't wondered about at least one of these scenarios:
-Mary will still be in diapers in middle school.
-I hope they make Velcro baseball cleats because Jonny's never going to learn to tie his laces.
-Why is Susie the only child who hasn't mastered scissors?
Likewise, the diabetes parent list:
-Bobby better go to college nearby since I'll be there every few days to help with his site change.
-I don't see how Matt can go to Kindergarten without me being in the building with him all day.
-Guess I'll be Ellie's prom date since she'll need help counting her carbs at dinner.
As I began to write a few paragraphs about last week's school field trip, during which my daughter admirably calculated carbohydrates and dosed insulin for unfamiliar Spanish food from a buffet table, I felt like I was bragging. It felt selfish to celebrate the success.
But I thought some more and realized that my goal was not to brag at all. My goal was to admit that until very recently, I thought this might never be possible.
When I share the story of the successful field trip I'm remembering the dozens of field trips I've attended to keep her safe. I'm remembering the hours, over the course of years, she's spent learning to be comfortable with counting carbs. I'm remembering surviving the anxiety of the first times she ate somewhere without me. I'm remembering all of the other diabetes 'all by myself' milestones she's passed over the years. I'm remembering that while she's survived all of them: the first low when I wasn't around, going to school, the birthday party, the sleepover, calculating restaurant carbs by herself, and so many more, I continue to assume that the next one will never happen.
I do get glimmers of hope, though. Blog posts about kids who've survived a gymnastics themed birthday party, changed their own sites, or gone on an overnight trip with another family have, over the years, led me to believe that these may be possible for my kid too. Blogs written by adults living with diabetes give a glimpse into the future. These people seem to be caring for their diabetes completely independently while simultaneously having productive lives, families, and fun adventures. Reading these stories reminds me that these days will come for my daughter despite all of the reasons I irrationally assume they might not.
When I share the story of the Spanish trip, or the site change or the sleepover I do so because maybe someone else out there needs a glimmer of hope; a reminder that the seemingly impossible may one day actually happen.
What would make a new diabetes diagnosis easier for people?
The question has been rattling around in my head for a couple of months now. Two events triggered it. First, a friend's 8 year old relative was diagnosed. That event brought up all kinds of memories for me, and thoughts about what it must be like for them to enter this strange new world. Also this winter, my dad was hospitalized for a very different type of issue, orthopedic in nature, but we had the familiar experience of being in a medical setting where people were speaking a language they knew well and with which we were unfamiliar; and of being in a situation in which many aspects of life changed in a heartbeat with a long adjustment to follow.
In the first few days after his hospital admission, my dad talked often about both staff and friends who had shared their experiences with his particular diagnosis. A doctor had experienced the same injury and told of his recovery. A friend said it took him at least six months to get back to normal. A therapist knew someone who had benefitted from a particular kind of treatment. There were, of course, conversations with the professionals about scan results, and medication options. There were prognosis trajectories to be understood and discharge plans to weigh. But in the end, it seemed particularly important to the patient to hear the stories of people who had been in his shoes.
We were very fortunate that my daughter was first treated for diabetes at an excellent hospital and that we were able to return there for her ongoing care with an exceptionally knowledgeable team. But what do I remember of that week and of the weeks following? I remember talking with the nurse on the unit who had diabetes and who said many reassuring things. I remember every little word of practical and emotionally encouraging wisdom from our first CDE who also happened to have diabetes. I remember being incredibly reluctant to attend a local support group and then feeling incredibly comforted once I got there.
Several years ago, an eight year old girl we love was diagnosed. The day after she returned home from the hospital, we were there. We did not bring reading materials (well maybe a Calorie King book). We did not discuss meter brands, or insulin to carb ratios. We brought a set of colorful measuring cups, Clifford juice boxes, sugar-free jello jigglers and ourselves. And we sat in their living room with them and listened. And we told them our stories. We let them know we'd been in their shoes. They could see we'd made it out of the woods.
There are few more comforting words than, "I've been there," especially when they're followed by, "and I promise it will get better." This kind of support happens sporadically, with JDRF's bags of hope and with other, more local programs, but somehow even though we were at a major hospital in a big city, we were not formally hooked up with any peer to peer support upon my daughter's diagnosis. How could that kind of reassurance become a bigger part of more people's stories?
With the news from Belgium on in the background this week, I'm reminded of a question I've considered and dismissed several times over the past few years:
Is my daughter, at any given time, prepared to 'shelter in place,' or to be displaced?
In this increasingly dangerous world where bombings, mass shootings, terror threats and other such events are becoming commonplace, it's question worth considering.
In her school classrooms, she has a meter and its assorted equipment, one juice box and a roll of glucose tabs. She carries these items with her throughout the day. Would that be enough for a six hour lockdown?
When we travel to the city for the day to see a show or visit a museum, we have double those supplies and usually a small snack. What if we were told to shelter in place due to an event near our location?
When we go away for a weekend, we take twice the number of supplies we think will need for the days we're away, and a vial of lantus and a pack of 10 syringes in case the pump fails. What if something happened which stranded us from home for much longer than expected?
Then there are the days when we run to Staples and forget to bring even the meter kit. Or go for a half mile round-trip walk to the library with only a tiny box of nerds stashed in a pocket, just in case. What if we were unexpectedly detained?
I don't like to consider these questions. Dwelling on the scariness of the world in which my child is growing up isn't on my to-do list. Carrying a bigger bag of stuff in case of an event I desperately hope will never happen seems like a burden which might outweigh the risk.
But maybe there should be extra snacks and spare test strips in her pencil case. And maybe we should have spare insulin and a few granola bars with us when we're away from home for the day. And maybe we should always have at least the meter with us even when we're walking a neighbor home who lives only a block away. And maybe every road trip should involve a really big box of supplies.
But maybe I don't want to think about it.