Skip to content

Posts from the ‘Real Life Diabetes’ Category

It’s a Good Tune.

“BEEEEP … BEEEEP… BEEEEP!”

“Mom, your Dexcom is making noise,” my daughter says casually, as we’re kicking the soccer ball around in the basement (because we’ll never, ever go outside again because snow).

“It is. Hang on a second,” I told her. A click shows that my blood sugar is over my high threshold, with a few yellow dots taking up residence on my graph. I’m not totally worried, though, because a check of my pump reveals some insulin still on board. I decide to let things play out and see where I land a bit later.

“I’m fine, kiddo. Let’s keep playing.”

The Dexcom has been part of my daughter’s life for as long as she can remember. When she was very small and figuring out her letters for the first time, I remember her running a tiny fingertip along the bottom of my receiver – “D-E-X-C-O-M spells … whaasat spell, Mama?”

“Dexcom. That’s the name of the machine.”

(Unlike most kids, my daughter’s list of first words included “pump,” “Dexcom,” and “diabeedles.” Maybe she’ll grow up to be a doctor? At the very least, this knowledge base has given her a leg-up on winning a few topic-specific spelling bees.)

As Birdy grew older, she started to understand some of the information that different diabetes devices provided. We’ve talked a little bit about how three digit numbers on my glucose meter that begin with “2” most often require me to take some insulin from my pump (same goes for the ones that begin with “3,” only those also come with some curse words), and how when the Dexcom makes an alarm sound, I need to check it and take some action.

“But that alarm – the BEEEEP … BEEEEP… BEEEEP! one – is one we can ignore, right Mom?”

“Ignore?”

“Yeah. When it goes BEEEEP … BEEEEP… BEEEEP, you don’t always look at it. But when it goes like this,” she raises her hands up in front of herself, like she’s sneaking up on something, “BeepBeepBeep really fast, then you look right away and get some glucose tabs.”

Funny how much she notices, how much of my diabetes self-care ritual has become a natural part of our time together.

“Kind of. The long beeps mean my blood sugar might be higher, but it’s not an emergency. The short beeps mean I have low blood sugar, and I need to get something to eat so it doesn’t become a big deal. Does that make sense?”

“Yeah.”

The sounds of the low and high alarms ringing out from my Dexcom receiver have become familiar, like a subtle (and sometimes not-so-subtle) soundtrack for my diabetes life, but I didn’t realize until recently that they are also sounds that remind my daughter of her mother.

The other morning, I heard Birdy walking into the bathroom to brush her teeth, and she was humming a little tune to herself, one that I recognized.

“Hey you. Are you singing a song?”

“Yeah. It’s the Dexcom beep song. It’s a good tune.” She grinned at me, toothbrush hanging out of her mouth.

Earned.

This morning, the Joslin Clinic shared a photo of Dr. C Kenneth Gorman, who was awarded the Lifetime Achievement Award for living 80 years with type 1 diabetes.  He’s one of five people to have received the medal, and the first Canadian (eh?).

Here is this wonderful man, medal and all:

joslin medalist

[From the Joslin Diabetes Clinic Facebook page]

Dr. Gorman redefines what it means to “earn” a medal, in my eyes.  Thank you, Joslin, for letting us know about Dr. Gorman and to Dr. Gorman for inspiring me to keep working towards my 80 year medal.


Old School Blogging.

Over the weekend, I saw a post from Stephen with the meme in it and felt this moment of, “Oh hell yes.  Something fun and kind of mindless that doesn’t involve being on a soapbox.  Want.”  So I did the meme post and it felt fun.  Like I didn’t give a shit and wanted to write something for the sake of the fun and connection of it, not to say something Important.

Reminded me of old school blogging.  I started writing online in May 2005 and back then, there weren’t a lot of people reading so it was kind of a don’t-give-a-shit-free-for-all.  Write whatever you want.  Don’t even spell check it HA HA you REBEL.  (But then go back and spell check it immediately, also giving it a grammar once-over because I am a lifelong English major.  In related news, never end a sentence with a preposition because it will give you forever-hives.)  Get to know your peers without self-editing and self-imposed deadlines and self-consciousness.

I don’t know what’s happened to my voice in the last year or two, but it’s harder and harder to write some days.

“Is it writer’s block?” asked Chris.

“Kind of.  But it’s more like rehashing the same topic all the time and while there’s always something new to say because diabetes is that way, sometimes I don’t want to talk about it at all.  Keeping my head straight while managing the disease itself doesn’t always leave room for editorial.  Sometimes the best way for me to deal with some diabetes stuff is to work it out privately, you know?”

It’s hard to share things as I’ve grown older.  I stopped sharing photos of my daughter (and have never shared her name) on this website because I wanted to protect her privacy, but after a while, I realized I wanted to protect some of my own privacy, too.  I chronicled my engagement and wedding and move from RI to CT (and back again, all Hobbit-style) and pregnancy and, and, and … and now I’m not sure what I want to share, but diabetes-wise, I’m more and more inclined to share less.

Logging on to write about a wicked low blood sugar, for me, is an easier story to share because it’s encapsulated in that moment of the low.  Writing about how it feels and what I did to treat it is therapeutic.  But it’s a little more challenging to write about the aftermath of lows like that; telling the story of how fears of hypoglycemia permeate so much of what I do takes longer to tell.  Do I write about how I have trouble going to sleep for weeks after a bad low, because I think about how morning might be a stretch to reach? Do I even want my brain to take that journey?

Nope.  Sometimes that answer can be a big, fat nope.  Writing about that stuff is a complete fuckery of my mind.  While I have been grateful, at times, for the ten years of archived writing here on my website because it can be good for me to see how far I’ve come, other times I am a little bummed out that ten years of writing about diabetes could easily turn into twenty (but maybe not fifty because What If and that’s the shit that makes my head spinnish).  It’s been a really short and simultaneously loooong ten years of blogging, and the same goes for 28 years with diabetes.

I miss the old school blogging, quite a bit.  I miss the small community feel that used to be in play, where people wrote in hopes of connecting instead of being “seen.”  (I’m not sure that makes sense written out as it feels in my heart, but I’m resolved to not delete anything from this post, kind of proving a point to myself that I can write without considering consequence.)  I appreciate all of the new information being posted and the innovation and reporting that’s taking place but I miss the people themselves.  I don’t give a shit about bylines.  I care about people.  The people are still there and sharing, but there’s a lot of Agenda permeating the community and I kind of miss when it felt more organic and PERSONAL damn it and a little less structured.  I, personally, am losing a bit of my grip on what motivated me to blog in the first place.  I want to return to the real “why,” which was to find community and make the journey with diabetes suck less.

So what’s the point?  The point is that I liked writing that post this weekend.  It’s the first time I’ve written (or at least listed) without thinking too much over the past few months.  The second time I’ve written without caring for consequence is today.  I’d like to return to that kind of blogging, for at least a while, because it feels good.  Fun is also a thing, and I want more of that.  Especially here on my website, where I’m proud have built my online nest.  Better than trying to create something “perfect.”  Perfect isn’t a thing.  Reality is, and this community has forever been rooted in reality.

The reality of life, of life with diabetes, of an imperfect life with an imperfect pancreas and an imperfect mouth that curses often but please forgive me for saying fuck so often.  It’s a curse of a curse.

Arrival and Departure Times.

Yesterday, I checked in at the Joslin Clinic in Boston and saw this screen on the wall:

“Are those boards new?” I asked the woman who was checking me in for my appointment.

“Which ones?” she said, acknowledging the on-going construction in the waiting room.

“The ones that look like they’re from the airport.  The arrival and departure boards for the doctors.”

“Those are new.  It helps keep people from asking when their doctor will be calling them in,” she said, scanning my insurance card.

In my twenty-eight years as a patient at the Joslin Clinic, I’ve never seen anything that noted how on time or late my doctor was running.  I remain a patient at Joslin because they have been taking good care of me and my diabetes since I was seven years old, but it is admittedly an all-day affair to make my appointments.  Driving in from Rhode Island takes about two hours, all told.  (Driving home, depending on how late I leave the clinic, could be a three hour endurance event, thanks to New England traffic on 95.)  Most of the time, I wait a significantly long time to see my doctor, but she doesn’t make me feel rushed when I’m in the office with her.  Usually, once we’re in her office, the wait seems justifiable because it’s clear she cares about her patients and doesn’t simply shuffle them out the door once the *ding* goes off.

My endo appointment yesterday was at noon, but the paperwork I received before the appointment asked me to show up at 11.30 am, so I structured my morning to pull into the Pilgrim Parking Lot at 11.15 am and be in the waiting room just before 11.30.  (I don’t make a habit of being late because there was one time I was fifteen minutes late due to traffic and they cancelled my appointment, so I’m paranoid and now perpetually early.)

My endo, according to the arrival/departure board was ON TIME.  Which is good, because I was also ON TIME.

After my pre-appointment work up, I waited in the waiting room to be called for my appointment.  As scheduled by Joslin, I had an endo visit at noon and an eye dilation at 1 pm, which the woman who scheduled my appointment on the phone said would be more than enough time between appointments.  At 12.15, I still hadn’t been called in to see my endo.  The board said ON TIME.  At 12.25, I was starting to get a little antsy and had my logbook and list of questions in hand so that I could get going as soon as my endo was ready.  When I was called in at 12.30, I called the board a liar because it still said ON TIME but things were not ON TIME and now I was going to be RUSHED in order to make my second appointment.

I have pockets of being upset about diabetes, but on the whole, I’m usually pretty okay.  But waiting for doctors and appointments and being on hold with insurance companies and having to have stupid fucking tests for c-peptide to confirm whether or not I have type 1 diabetes so that my insurance company will cover an insulin pump … this sort of thing makes me bananas.  Diabetes management on a day-to-day basis takes up significant brain space, but it’s necessary so I do it.  Sitting in a waiting room for an appointment that I was ON TIME for but the doctors are not turns me into a ball of rage.

I’m glad I have an established history of reasonable communication with my endocrinologist, or she would have thought I was unhinged.  I was so angry by the time I was called into the appointment at 12.30 because I knew that I only had 28 minutes to hash out six months worth of diabetes-related concerns (after she did the required hearing of my heart, checking of my thyroid, testing my feet for nerve damage, etc) and then run downstairs to the eye clinic for my dilation.

To make matters more frustrating, the c-peptide test that I had done was not in her file.  It was missing.  “I will find this,” my endo said, shuffling through the pile of papers on her desk.  “I will email the team now and have them follow up with your lab this afternoon.”

“This is making me crazy, and I feel bad complaining about it to you, but this is not cool.  The board says ON TIME and yet we’re just now in the room, and instead of being able to talk about what needs to be talked about, you are being forced to chase down paperwork for a lab I’ve already done to prove I have type 1 diabetes for a stupid insurance company.  And I have thirteen minutes before my eye dilation appointment downstairs.”

The look on her face was one of understanding.  She nodded, and I wondered what kind of boxes she was required to check throughout the day.  How many patients was she required to see?  How often are the patients ON TIME, or prepared with log books and questions?  How many times is my endo put through a discussion about what insurance companies do or don’t cover, when that is not her job?  My journey with diabetes is forced, but hers was chosen, and there are moments when I want to thank her for making this her life’s work.  And then I want to throw a rock at the arrival/departure board and shatter it into a million pieces because that day, it was just another, “Oh, what a good idea and this will really help patients!” but instead it’s another savvy-looking tool in place to keep patients sitting still and not asking questions.  “Yes, your doctor is ON TIME.  Look at the board.”  What is the point of this board if it’s inaccurate?  Just to look patient-centric?  How about being human-centric and requiring that patients and doctors alike be on time and prepared for their appointments?  And what are my options if the doctor is running terribly behind?  As a friend commented on Facebook:  “So what are the ramifications if it says ‘WICKED LATE’ next to one doctor’s name? Do you get to choose, as the patient, to leave and not be charged?”

We burned through my appointment in record time – my weight is down, A1C is fine, plan is to continue to be tuned in to diabetes – and then I was shuffled off to my eye appointment.  The eye appointments always take a long time (dilation) but that appointment was uneventful as well, with my macular edema holding steady where it was back in May (I’ll take “not worse” and “staying stable” as a good sign).

And then I was off home.

Later in the evening, the phone rang.  It was my endocrinologist, who was calling to say that the c-peptide test had been found and the results were in.  “This won’t be a surprise to you, but your c-peptide was undetectable.”

“So you’re saying I have type 1 diabetes?”

“Yes.  Just like we thought.”

“Well I’ll need some time to adjust to this new diagnosis, but thank you for letting me know.”

She laughed, and we exchanged other pleasantries before getting off the phone.  Birdy was sitting at the kitchen table, staring at me while I was talking with my doctor.

“Mom, you have diabetes?”

“Mmm hmmm,” I said absently, handing her a napkin while she ate her dinner.

“But mom, didn’t you already know?”

“I already knew.  But now it’s official.”

She looked at me with a mouthful of food.  “Well that doesn’t make any sense and anyway, you knew the whole time!”

I respect my endo.  And the Joslin Clinic.  But holy hell, yesterday’s healthcare excursion was an exercise in frustration and to boot, now I have diabetes officially, after all this time of not wondering.

 

Looking Back: Complications.

As I head up to the Joslin Clinic today to have my eyeballs, and my soul, looked at to make sure both are fine, I was reminded of this video from last year about diabetes-related complications.  I still stand by the sentiment that you owe it to yourself to live the best life possible, even with whatever you’ve got.

Hopefully today goes well. Either way, I’m on it.

Wild Krattsabetes.

Wild Kratts have invaded my house in a big way.  It’s okay, because Birdy loves watching them and she learns all this random stuff about animals.  (“MOM! The lion’s mane is the same color as the savannah grass,” yelled from her car seat as we’re driving.  So I’m learning too, apparently.)  She dons her version of a creature power suit and goes leaping all over the basement, pretending to be a lemur or some other critter.

“MOM!!  He has a Dexcom!!” she said one morning.

“What’s that?” I asked her, coming over and sitting next to her while she’s watching television.

“Look!” and she points to the screen.

Sure enough, the wrist communicator that the Wild Kratts use to talk to their team back at the Tortuga looks almost exactly like my Dexcom receiver.  (Please forgive me, because that whole sentence made complete and absolute sense to me.)  See for yourself:

“You’re right, kiddo!  That looks a lot like my Dexcom!”

“Yeah, but they use theirs not to keep an eye out for whoa blood sugars but to talk to Aviva.”

“Who?”

“Aviva.  She helps the Wild Kratts by building their creature power suits.”

And here I thought Aviva was a glucose meter from Roche.

 

Looking Back (and Forward): Diabetes Haiku.

During this week’s #DSMA chat, a sidebar discussion about diabetes haiku broke out, and in a matter of seventeen syllables, things took a poetic term.


I was reminded of a post from a few years ago about insulin haiku that still rings true because I’m clearly still hooked on the stuff:

Such a small bottle
with such a huge influence
on my whole damn life.

In a carefully orchestrated combination of syllables, what would your diabetes haiku say?

Follow

Get every new post delivered to your Inbox

Join other followers