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biohazard spit    Kovler Blood Samples

In April, I interviewed with the University of Chicago's Kovler Diabetes Center hoping to be included in their MODY registry. The registry strives to correctly diagnose people with MODY and follow them over time to learn about monogenic forms of diabetes. (If you're curious about these and other types of diabetes, see this earlier post.)

My interest in the registry is three-fold. By participating, I can:
1) learn my own MODY subtype and use the knowledge for improved medical care;
2) get my children tested and learn whether they have MODY (and which subtype);
3) add to the knowledge and understanding of this relatively obscure form of diabetes.

This kind of DNA testing is very expensive so I appreciate the cost is entirely covered by the study. And the process is easy and somewhat fun if you like to geek out on health data (a really useful trait if you happen to have diabetes).

After completing the initial screening and filling out a longish online form, the study coordinator advised me to wait a few weeks for the enticingly named "spit kit" to arrive. I came home from vacation last week to find both the spit kit and (added bonus!) a blood sample kit.

The process of gathering the samples was fun - in a faux science-y kind of way. Even the drudgery of routine finger-pricking got a little boost.

I mailed the materials back to Kovler yesterday and await the results. MODY-1 and MODY-3 are prime suspects...

I signed up for my first MOOC (Massive Open Online Course): Nutrition for Health Promotion and Disease Prevention through Coursera.

The class starts in 10 days and I can't wait. While I have worked and taught in the online space before, this will be my first experience inside a MOOC. I'm excited by the newness of it and hope the course will be engaging, challenging and filled with diverse and curious learners.
I'll let you know.

Aside from the occasional omelet, vegetables rarely make an appearance at the  breakfast table (at least in this country). It's a mild injustice - salads for breakfast can be really, really good.
I have my favorites (this one, for example), but below are three more I plan to try out soon. (Clicking on each image will take you to the corresponding recipe.)

winter salad  egg-white salad  deconstructed salad

Do you eat salad for breakfast?

4th Annual Diabetes Blg Week 2013

Today's post was written for Diabetes Blog Week.
The Prompt:
 Other diabetes blogs worth reading.

Yesterday I found Ilana Lucas’s Diaturgy. Her post Ode to an Insulin Pump led me to explore the site and smallish collection of well written and interesting posts.

I found Meredith Pack’s blog, With a Side of Insulin, today. There’s no post in particular, I just find the entire blog relatable and fun to read.

I was glad to see a couple of familiar blog names:

  • Texting My Pancreas – Great name and the blog itself is well written with a sense of fun. The day I found this site, I stayed a long while clicking, reading, clicking…
  • Six Until Me – In a post titled "Memories" Kerri describes her experience of a childhood low and her Mom helping her through it. Her story affected me even more as a parent than as a person with diabetes.

(Thanks to Pearlsa of A Girl's Reflections for inspiring today's topic.)

This wraps up my first Diabetes Blog Week. Thanks very much to Karen at Bitter-Sweet for organizing it and for creating connections within the DOC.

Here's an empowering poem by Ogden Nash. I like to imagine diabetes as the bear.

Isabel met an enormous bear,
Isabel, Isabel, didn't care;
The bear was hungry, the bear was ravenous,
The bear's big mouth was cruel and cavernous.
The bear said, Isabel, glad to meet you,
How do, Isabel, now I'll eat you!

Isabel, Isabel, didn't worry.
Isabel didn't scream or scurry.
She washed her hands and she straightened her hair up,
Then Isabel quietly ate the bear up.

Once in a night as black as pitch
Isabel met a wicked old witch.
The witch's face was cross and wrinkled,
The witch's gums with teeth were sprinkled.
Ho, ho, Isabel! the old witch crowed,
I'll turn you into an ugly toad!

Isabel, Isabel, didn't worry,
Isabel didn't scream or scurry,
She showed no rage and she showed no rancor,
But she turned the witch into milk and drank her.

Isabel met a hideous giant,
Isabel continued self reliant.
The giant was hairy, the giant was horrid,
He had one eye in the middle of his forehead.
Good morning, Isabel, the giant said,
I'll grind your bones to make my bread.

Isabel, Isabel, didn't worry,
Isabel didn't scream or scurry.
She nibbled the zwieback that she always fed off,
And when it was gone, she cut the giant's head off.

Isabel met a troublesome doctor,
He punched and he poked till he really shocked her.
The doctor's talk was of coughs and chills
And the doctor's satchel bulged with pills.
The doctor said unto Isabel,
Swallow this, it will make you well.

Isabel, Isabel, didn't worry,
Isabel didn't scream or scurry.
She took those pills from the pill concocter,
And Isabel calmly cured the doctor.

- by Ogden Nash

4th Annual Diabetes Blg Week 2013

This post was written for Diabetes Blog Week
The Prompt: Essentially, share some art.

Here's the dream device I want: an integrated CGM/Insulin-pump device.

Along with that, I’d like a food log with voice recognition capabilities. It should also be able to track other diabetes details, like:

  • How much sleep did I get last night?
  • Am I stressed out? Under the weather?
  • Did I exercise today? At what time? For how long?
  • Am I properly hydrated?
  • How many days since last site change?
  • How old is this insulin?

It would be really fantastic if the device could learn some of this information through observation. Maybe there’s an embedded pedometer or fit-bit that tracks movement?

This artificial pancreas is a good start.

4th Annual Diabetes Blg Week 2013

This post was written for Diabetes Blog Week
The Prompt:
Tell us what your fantasy diabetes device would be. 

(This post was written for Diabetes Blog Week)

I feel like I’m talking too much.
Also, I’d like to have some time today to read what others of you have written this week.
So today I offer a wee bullet list of accomplishments from 2013:

  • I started Icarus & Daedalus
  • I used the dual wave pump setting – twice!
  • I met Jessica and authored a piece for A Sweet Life
  • I started going to the gym before my family gets up in the morning
  • I contacted the Kovler Diabetes Center to join their MODY Registry

4th Annual Diabetes Blg Week 2013

The Prompt (suggested by Hillary at Rainie and Me):
We don’t always realize it, but each one of us has come a long way since diabetes first came into our life. Share the greatest accomplishment you've made in terms of dealing with your diabetes. 

In 2004 my first child was delivered via c-section. The c-section was planned, as was most everything about the pregnancy:

  • The switch, prior to conception, from oral medication to insulin (MDI - Multiple Daily Injections)
  • The counting of carbohydrates and adjusting of doses as hormone levels changed
  • The umpteen appointments with the endocrinologist, obstetrician, and perinatologist
  • The very many ultrasounds
  • And the birth plan that specified the endocrinologist’s favored delivery time: 11 AM

While I was grateful to be pregnant, I did not love the experience of it, as many women do. Instead, the frequent monitoring served as a constant reminder of the risky environment I felt I was providing for our growing fetus. Having a birth plan felt reassuring.

I was relieved and excited when the delivery date arrived. September 10, 2004 was a busy day in the labor and delivery wing. (Evidently, I wasn’t the only soon-to-be-mother hoping to spare her child a September 11th birthday.)

Despite my most proactive efforts, 11 o’clock came and went.

“Excuse me, my c-section was scheduled for 11 and it’s 11:30 now. I have diabetes. My blood sugar’s okay right now, but I haven’t eaten since 9 last night.”

“Excuse me, I can see you’re busy, but I was supposed to have surgery 90 minutes ago. I have diabetes and I haven’t eaten in over 15 hours…”

“Excuse me…”

I continued politely bothering the busy hospitalists. Eventually, 2 hours after the scheduled time, off we went to the operating room. I met the team, got hooked up to some equipment, was anesthesized, and within about a half hour everything was underway. Probably sensing that I'm nervous about the surgery, my OB made light chit-chat:

OB:      So, Emily, do you guys have a pediatrician picked out?
Me:      We do – it’s Dr. Papadopoulos.
OB:      Aww, he’s terrific! And such a nice man. Here’s a challenge – can you spell his last name?

[That I cannot spell the pediatrician’s long, Greek name doesn’t surprise my OB. It surprises me, though, as I’m generally a good speller. It’s my first clue that something is amiss.]

OB:     (New topic) So, when you're in recovery where should your blood sugar be?
Me:     Well… Mmmmm... I think... Whatdidyousay? (Is that slurring?)
OB:     After surgery – your blood sugar. Where does your endo want your sugars?
Me:     (Can’t. Quite. Reach. The Words.)

Something’s wrong, I think.
I manage to ask the anesthesiologist if the anesthesia is scrambling my thoughts. Nope.
Something’s wrong, I think.

“Something’s wrong,” I say,I’m low. What's my blood sugar?”

Anesth:   Where's your meter?
Me:           I’m in surgery..I'm naked. I don't have my purse.
Anesth:  I don’t have a meter.

(thunk.)

Me:           But – the plan... the blood sugar... how will you know if I need insulin?
Anesth:   We’re not doing any of that.
Me:           But, the plan...! I'm low. I'm very, very low.

[I’m not thinking anymore about the baby, or about being cut open. All I feel is the panic of an extreme low. A low that the plan – the one that nobody is following – was designed to prevent.]

I want my OB to remind everyone of our plan, but at this moment she’s tugging the baby out of me. I can’t catch her eye. I’m not her priority and I feel very afraid.

I hear the anesthesiologist say, “There's no meter; every floor is supposed to have one.”

I'm not a player in this scene anymore. I am tired. I close my eyes so I can focus on listening, which now requires some effort.

I hear someone say, “Get her some orange juice.”
I hear my husband ask, “Are you sure you can give her orange juice during surgery?”
I hear a code announced over the PA system.
I start to wonder about the code, but doing so takes too much effort.

I hear drawers opening and closing. They sound like the junk drawers in our kitchen at home. The ones that have AAA batteries rolling around inside. I don't feel afraid anymore. I feel tired and calm and focused and I wonder why a drawer in an operating room contains AAA batteries. I'm aware of the chaos around me but I feel detached and too tired to care about it.

Somebody finds 500cc of dextrose in a drawer.
10 seconds and I feel the change. So much faster than juice.

Someone asks how I feel.
“It's helping. I'll feel better soon.”

“You have a beautiful, healthy baby girl.”
I smile from the post-low haze.

It will be hours before I really feel better, but this lovely baby helps a lot.

Greta's-birth / diabetes-and-pregnancy
Happy, Lucky.

4th Annual Diabetes Blg Week 2013 / Diabetes-and-pregnancy

This post was written for Diabetes Blog Week

The Prompt (suggested by Jasmine at Silver-Lined): Share a memorable diabetes day. 

Food is a major focus of celebrations in our culture. Sweet treats especially play such a prominent role that a party without them is almost unimaginable. A birthday without cake? Valentine’s Day without cookies? Halloween without candy???

Yes. I propose that we re-imagine how we celebrate, overturn the norm, and actively shape a new culture of wellness.

Here’s the challenge – pick the micro-culture you’re going to change – your family, school, office, or block. Consider starting with your own birthday. Serve fruit kebabs. Or a watermelon with candles in it. Sure, it will feel awkward at first, but few people will find the change refreshing. Encourage those people to carry the charge the next time and support them when they do. Little by little, people will stop believing that cake has to be part of a birthday celebration.

Commit to gradually shifting what celebrating looks like by making some small changes:

  • Make the focus something other than food. You got a promotion? That’s awesome – let’s go for a walk to celebrate and you can tell me all about it.
  • Be creative. Breakfast meeting? Opt for Clementines over pastries. (yes, the fist time I brought Clementines to a meeting I felt a little funny handing them out. But guess what – they loved it. And now it’s just what we do.)
  • Trump the cupcake. Sure, cupcakes are cute. But so are these (my versions of which  were a big hit with kids and parents at my children’s recent class parties):

Canteloupe Lollipop   Rainblow Fruit Kebabs   Flower-shaped Cucumber Slices
Photos: school-bites.com; weightlossfitnesshealth.tumblr.com; and madiganmade.com.

(And yes, there’s still a place for the odd cupcake.)

4th Annual Diabetes Blg Week 2013

This post was written for Diabetes Blog Week

The Prompt (suggested by Briley of inDpendence):
Recently various petitions have been circulating the Diabetes Online Community. Tell us who you would write a petition to – a person, an organization, even an object. What are you trying to change and what have you experienced that makes you want this change? 

Six months ago my long-time and most trusted endocrinologist suddenly stopped practicing. The prospect of having to replace her was unsettling – after years of working together, she knew my disposition, motivation and relevant goals and shortcomings. All that knowledge translated into effective care. Transitioning to a new endocrinologist meant starting over from scratch.

Last month I met my new team and was struck by how different their model is from that of my previous team. I’ll still have an appointment every three months, but at those visits I’ll alternate between seeing the endocrinologist (every six months) and either the Nurse Practitioner or the Certified Diabetes Expert/Nutritionist.

While I appreciate the emphasis on specialized care, I wonder how easy it will be to build relationships within this structure. I believe patient/medical team relationships are closely related to both the quality of care I receive and my own motivation. So I have some concerns. With these in mind:

I Hope My New Health Care Team Will Understand:
Diabetes is demanding. Managing blood sugars is a never-ending exercise in planning, calculating, adjusting, and refining. And the resulting numbers don’t  necessarily reflect that effort, which can be enormously frustrating. Diabetes is also pretty solitary.

Because of that, I hope the new team won’t say things like:
Your blood sugars look awesome. Keep doing what you’re doing!”
A comment like that, from my medical team, will make me feel like diabetes is mine alone to understand and manage. I suppose for a few hours a year, I’d like it to feel less that way.

I hope instead they'll say:

“Your blood sugars look awesome. You’re doing a great job and we know it’s not easy. Stick with it – because all the that work is paying off. Here are some ideas that may make things easier and help you get even better results.”


What I Hope My New Health Care Team Doesn’t See (just yet)

  • I replace my blood glucose meter about every 5 years (not the recommended 1-2 years).
  • I change the lancet maybe once a year (not with every test, as recommended).
  • I do not store ketone strips properly (nor do I replace them when they expire, as they did in 2010).
  • And while on the subject of expirations, my glucagon pen expired in 2007.

It’s not that I wouldn’t disclose this information; it just feels a little early in our relationship.

4th Annual Diabetes Blg Week 2013

This post was written for Diabetes Blog Week 

The Prompt (suggested by Melissa Lee at Sweetly Voiced):
Often our health care team sees us for just 15 mins several times a year. What do you wish they knew about your and/or your loved one's daily life with
diabetes? What do you hope they wouldn't? 

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