Diabetes Blog Week: Memories

I’m late, but I’m here! And that’s okay. I even have a personal Facebook message from the lovely Karen Graffeo, founder of Diabetes Blog Week, to prove it. 

DBW

Here’s Wednesday’s topic: Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

I thought and thought (and thought and thought) about a single diabetes day that stands out in my memory, and I’m not sure I have one that I haven’t already written about. Or one that’s interesting enough to warrant an entire blog post. Instead, I present you with a list of my all-time Top 10 diabetes moments.

Here they are:

1. The time I left a purse full of syringes at school, and almost got detention for having them on campus.

2. Leaving my insulin pump on a boat while I snorkeled in Key West, and getting out of the water to find my blood sugar (and my pump) right where I left them. Hooray!

3. The time I felt kind of low while walking around in New Orleans, then checked my blood sugar, learned it was 26, and freaked out. I think I downed about 170 ounces of Coke right afterward.

4. Using a CGM before they were readily available. I had to have it “installed” at the Endo’s office, then wear it for 24 hours and return it. I got sick and had a fever (and super-high blood sugars) during those 24 hours, so the test results were null and void anyway.

5. My pump running out of battery power just before midnight on New Years Eve 2003. A nice cop who was standing outside the bar I was at drove me to different drug stores to find a new one.

6. Every single time someone’s asked me about the cell phone clipped to my pocket.

7. My very first endocrinologist office visit, where the doctor turned the hot and cold water taps off and on to demonstrate the pancreas and liver working together in a non-diabetic kid’s body.

8. The first time I had a scary low. I was in 7th grade, lining up to walk down to the cafeteria for lunch, and my vision started to go. Oops.

9. Bumming rides to the drugstore my first year of college for insulin refills.

10. Arriving at Disney World in July of 2011 to find Sara, Martin, Jess, Scott, C, Karen and Brian waiting for me by the Monsters, Inc. ride. Then eating ice cream with Kim. Then, several hours later, meeting Scott Johnson, George, Kerri and Lee Ann. That was a good day.

Biohazards at Work

When I’m trying to hang on to something that I really cannot lose, I put it with the one other thing that I really cannot lose (besides my child): my glucose meter.

Sometimes it’s a necklace, or a wad of money, or some sentimental geegaw. A few weeks ago, it was a couple of receipts I needed for an expense report.

It wouldn’t be an issue if I was one of those neat diabetics who immediately threw away her used test strips, or who always remembered to wash her hands before testing and wipe with an alcohol swab afterward. I consider myself more of a freestyle tester — collecting test strips in the case until I toss them out in one confetti-like dump, wiping a bloody fingertip on a dark pair of jeans. It’s kind of gross, and I know it, but I’m generally able to keep it to myself.

But then there were the receipts. These were records I would have to share with fellow coworkers. Suddenly, my disgusting habits were a matter of agency record. That’s because the receipts looked like this:

receipts

Now, I don’t keep my diabetes a secret — especially not at work. But I was embarrassed. It looked like a tiny murder had taken place in my purse. Exhibit A: blood-soaked parking garage records.

I imagined our business manager thumbing through the stack of papers on her desk and recoiling in horror. And then maybe calling the police. I’d be known as the girl who adds a little smidge of her own DNA to interoffice paperwork.

In the end, I made copies of the receipts. And as I handed in my expense report, it occurred to me that it might look suspicious that I wasn’t turning in the originals. I was a fraud and a murderer.

“Here’s my expense report,” I explained. “I made copies of the receipts because I put them in my blood sugar checker thing to keep them safe and I got blood all over them. And that’s disgusting so I made copies.”

“Okay,” she said, reaching for the papers. “That’ll work.”

And that was it. I went back up to my office, one more chore crossed off my to-do list, to check my blood sugar again and bleed all over something else.

The BioHub Brouhaha of 2013: An Animated Retrospective

So most of us know what happened last week with our super top-secret cure-that’s-not-really-a-cure exploding Internet DOC rage fundraising nonsense. And everyone has an opinion on the subject; most of those opinions have already been (very eloquently) expressed in others‘ blogs.

Multiple times, I tried explaining the situation to some non-diabetic, non-DOC friends, family members and co-workers. I work at an advertising and PR firm, so I assumed most of my contemporaries would really get what a shitty PR move the *fauxnouncement* was. Instead, most people just gave me a half-smile as they tried to empathize with a concept they couldn’t really grasp.

So. For those unfamiliar with the “5 more years” nightmare and all the feelings that can beset an Internet-full of diabetics like a bad case of sorbitol-induced diarrhea, I attempted to retell the story using the most expressive content I could find: GIFs.

[Many thanks to Martin Wood, who helped collect the GIFs below.]

March 4, 2013. People with diabetes and parents of children with diabetes across the world began their days with carb-counted bowls of cereal, infusion set changes and finger pricks — as usual. But then, a stirring.

I saw it first on Kim’s Facebook page: a mention from Tom Karlya, Vice President of the Diabetes Research Institute and self-appointed Diabetes Dad, about “What We Have Been Waiting for Since Diagnosis!!!!!!!!!!!!!!!!!!!!!!”

OMG

OMG_kitty

Pretty exciting announcement, right? Only it wasn’t really an announcement. It was an announcement that there would be an another announcement. It was all top secret, see?

secret

Those of us who have had diabetes for 5, 10, 20 or more years were skeptical. After all, we’ve all been told since the day of our diagnosis that a cure for diabetes was “5 to 10 years away.”

okay

We’ve also seen mice, dogs, wombats, fruit flies, Shetland ponies and other lab animals cured of Type 1 diabetes. None of it’s translated to human stuff.

But then, this is Diabetes Dad, right? Dads don’t wildly exaggerate for self-promotional purposes. Dads don’t do things to get your hopes up and then smash them to bits. Dads aren’t mean, are they? What if . . . what if he’s for real?

cookie_monster

In other corners of the Internet, some parents of recently diagnosed children were flipping the hell out, God bless them. “They were right!” they must have been thinking. “It’s been 4.5 years since little Johnny was diagnosed, and now, the cure has arrived! The nightmare is over!”

super_happy

But real information was still hard to come by. Ol’ Diabetes Dad was sworn to secrecy, and the Diabetes Research Institute’s website was down — it takes a lot of website preparation when you’re about to make an announcement that will change the diabetes world. So everyone had the rest of the day — and the night — to dream big dreams about the DRI’s news.

waiting

March 5. The time had come. DRI’s website was back in business, and they posted a video that would explain all the details of this diabetes quantum leap.

we_are_listening

It was the BioHub! A small sponge-y thing that goes in your body that makes insulin! You don’t have to take anti-rejection drugs! It gets all filled up with re-generated or transplanted islet cells, and the scientists can keep it healthy with “helper cells” and oxygen and things. (For a very well-written description of the BioHub, see Mike Hoskin’s DiabetesMine article.)

Diabetes will be reversed!

halleluja

The announcement came with a few caveats, though. See, the BioHub hasn’t actually been invented yet. Per se.

oprah

Also, the scientists at DRI don’t really know where they’re going to get all these islet cells.

chopped

And they don’t really know where in your body they’re going to put the BioHub. Also, it’ll cost a lot. Like, A LOT. And, it’s pretty close to several other projects that are being done by other organizations. So it’s not really a new thing, even though it is really cool and amazing and still imaginary.

unimpressed

At the end of the explanation, the BioHub video tells us that, if we want this thing to actually happen, it’s up to us. And our money.

AC

And the best part: this cure should be ready to go in . . . five to seven years.

disappoint

I’d say that people were pissed, but that might be an understatement. (According to Diabetes Dad himself, people were particularly nasty in email messages, and some people even threatened him and his family.) The DOC was alight with anger and frustration and other bad feelings.

original-1

We’d been promised something cure-like, and instead had been presented with another theoretical treatment that still required lots of money, lots of time, and lots of patience. A theoretical treatment that, if it had been announced without the previous day’s fanfare, would have been welcomed as a big step toward islet cell transplantation.

Now, all the science and technology and forward movement that so many people had worked very hard to accomplish had been overshadowed by one man’s really bad blog post.

dunk

Diabetes Dad apologized. When he said things like, “The promise of restoring natural insulin production to millions of children and adults living with diabetes will be outlined” or “I am a diabetes dad……….but it very well may be, for not too much longer,” he didn’t really mean that we were close to a cure for diabetes. He just meant that he needed more money to get closer to making a plan to cure diabetes.

bill-cosby-1

March 6 – Present. Diabetes life goes on. We test, we inject, we eat, we repeat. We try to remain grateful for the amazing tools we do have, and keep a little bit of hope alive for the day when a cure (however you define it) really does arrive.

tumbleweed

And we remember that sometimes, as wonderful and dynamic as the Diabetes Online Community is, shit gets out of control — fast. When something sounds too good to be true — even when it’s from a trusted member of the community — it probably is.

It’s better to take a step back, breathe, and go eat a cupcake.

enough_internet

I Hate the Nightlife

It would make sense that low blood sugar and sleep deprivation share some of the same symptoms: confusion, a vague sense of instability, lethargy, hunger, uncontrollable rage unfairly aimed at the family dog. Sleep and sugar are both things our bodies and brains run on, and when they’re in short supply, everything feels . . . wrong.

The difference between sleep deprivation and low blood sugar? One of these problems is easily fixable.

I know it sounds trite and ungrateful and cliché to complain about the lack of sleep that comes with a new baby. But I’ve got diabetes, too, and between those two factors, I honestly don’t believe I’ll get a solid night of sleep any time before 2024.

As much as people assure me that, at six months, little Magpie should be sleeping through the night, she’s just not. Old girl will go three to four hours, tops, but then she’s up for a midnight — or early morning — snack. And during those three to four hours, when I should be clinging desperately to every minute of sleep I can possibly get, I can often be found in the kitchen, draining a juice box or filling my face with Easter candy. Or I’m in the bathroom, rage-bolusing a high blood sugar from a low I overtreated earlier in the night, or changing my infusion set because the rage boluses aren’t working.

Somewhere along the line, my record of almost-perfect overnight blood sugars went off the rails. Now, it seems, I’m either climbing, or crashing, or it’s time to calibrate the sensor, or there’s a weak signal that needs my attention, or my CGM beeps and wails and screams just for its own amusement. Last Thursday I awoke to find that, in my sleep, I’d given myself a 5-hour square bolus of 10 units of insulin. I can’t be sure, but I’m guessing it happened while I was trying to silence an alarm. Thankfully, I caught it a couple of hours in — only 3.5 units had been delivered.

It’s a cycle. The breastfeeding affects my blood sugars, which keeps me from sleeping, which (I swear) affects my blood sugars, which causes me to overtreat a high or low, which sends me in the opposite direction, which wakes me up or makes me more tired . . . you get the idea.

The most tragic part of all of this is that sleeping has always been one of my favorite hobbies. Even when it seemed there was nothing else to look forward to, there was always a nap to be had. I collected pajamas and sheets and pillows the way cyclists hoard bike accessories.

Now I look at the smiling people on mattress commercials and want to throw things at the TV. I’ve got this weird perma-bag that hangs out under my right eye, fluctuating in puffiness according to how much salt and caffeine I’ve consumed in the form of microwave popcorn and Diet Coke.

I’m losing my damn mind, and even if there was something I could do about it, I’m too tired to try.

No insight to this blog post — nothing to learn or appreciate. Just me, complaining about the same stuff millions of other people soldier through every day.  And really, I don’t expect anyone to feel sorry for me, and that’s okay. I’ve got enough self-pity to last a thousand sleepless nights.

The Tinglies

My feet feel weird.

I don’t know how else to say it, and for that reason, I’m not sure what to do about it. And I’m kind of freaked out.

It all started with my “ring toe” on my left foot. (You know, where I wear my wedding band all the time.) A few weeks after I had the Magpie, I noticed it would go numb a few times a day. I blamed it on a few things: exhaustion, pregnancy, tiredness, exhaustion, and not wearing shoes very much (clearly, I was stretching).

Just when I was about to get seriously worried, it went away. All was well with my feet, except that they looked a little like they belonged to komodo dragons.

But now it’s my right foot. On the side, kinda forward from the ankle — it feels like someone glued an extra funny bone to the area where the buckle of my favorite mary janes hits my foot. If I turn my foot a certain way, or twist it a little, or wear a certain pair of shoes, I get this weird nerve-y buzzing tingliness that shoots down the length of my foot to my last two toes. Some days it’s more pronounced than others, but even on the days it’s not there at all, I’m still thinking about it.

Foot issues are the number 1 boogeyman, I think, for most people with diabetes. The threats of blindness and amputation are always there, hiding behind the worst-case-scenario bushes, waiting to jump out and ambush a perfectly good Wednesday afternoon when things might look a little blurrier than usual, or when your right pinky toe starts buzzing in your shoe.

But as much as I’ve heard about taking care of my feet, no one’s really told me what to do if (or when, if you’re a real pessimist) they start to misbehave. Do I call my CDE and waste thirty minutes of her time on something I can only describe as “weird and funny bone-ish?” Do I head to the sketchy Diabetic Foot Wound clinic down the street, and hang out with all the people in wheelchairs in the waiting room? Can I call a normal podiatrist? Should I invest in a thick, sexy pair of diabetic socks? I don’t know.

So far, my main course of treatment has involved poking the afflicted area every 4 to 6 hours to see if it still feels tingly. It does.

After all my worry, it could just turn out that I’m getting older and so are my feet. I mean, if non-diabetic people didn’t have foot issues, too, there wouldn’t be a $927 billion* shoe insert industry in this country, would there?

What say you, diabetic friends of the internet? What’s the first step in foot tingliness investigation? And if it is diabetes-related, then what?

Help a girl — and her feet — out.

If you look very closely, you can see the lightning bolt shooting down the side of my right foot.

If you look very closely, you can see the lightning bolt shooting down the side of my right foot.

*dollar amounts estimated

Oh, the Technology!

I may have been quiet, but while I was holed up with my wee Magpie this past  fall, I spent a lot of time on Facebook. And it seemed like every time I pulled up my timeline, along with cheesy “Repost if you like baby dogs!” updates and stomach-turning political missives, there was a new piece of diabetes technology staring me in the face.

Most of these tech pieces were Dexcom G4 CGMs. My Facebook friends shared pictures of boxes full of new sensors, shots of high-tech display screens, updates on how long each sensor was lasting and how great the radio frequency range was. Some d-friends post pictures of their blood glucose test results on various machines, just to see (and show) how much they can vary from device to device. There’s the meter with the back-lit screen and the friendly reminders, the meter that doubles as a USB drive and automatically uploads blood sugar data to your computer. There’s a meter that connects to your iPhone and a meter that delivers Civil War trivia alongside your blood sugar results.*

verucaAnd I’m not sure if it was the postpartum haze or a lack of real contact with the outside world, but seeing all those terrific gadgets nurtured deep feelings of envy and inadequacy in my insulin-starved soul. I felt like a diabetic Veruca Salt: “But Daddy! want a meter that communicates in conversational English!** I want one now!”

Never mind the fact that I’m attached to thousands of dollars of very sophisticated diabetes management technology that I’m not even using to its fullest potential. I was thrilled to open up my brand-new Revel a few months ago, but I’ve barely glanced at the accompanying guidebook that details all the fancy new upgrades I should be enjoying. All it takes is a few glitches with the Java settings on my computer to discourage me from uploading the weeks of blood sugar patterns stored in my CGM. And I’ll be damned if I can conjure up the energy to change the battery in my OneTouch UltraMini.

All this while there are people out there who can’t even get their hands on a reliable supply of insulin.

Just like  it can with everything else in life, technology has a way of complicating the hell out of the relationship I have with diabetes — both physically and emotionally. There’s almost too much access to information, and then there’s more guilt when I’m not using it the way I feel I should be. And then there’s the green-eyed ogling of my friends’ new doohickies.

What’s vital, I’ve decided, is not conflating the possession of technology with the successful management of diabetes. Instead, it’s best to do the most with what we have, whether that’s a syringe and a bottle of insulin or an insulin pump that lights up the night with warnings and whistles and psychic tendencies. That’s because no piece of diabetes management technology is any smarter or more effective than the person using it, right? Without a user to calibrate and set blood sugar thresholds and do basal tests, an insulin pump is just an expensive little brick.

So, I’m committing myself to contentment. I’ll tweak what I have. I’ll finally go through the Revel owners’ manual. I’ll remind myself that, as jealous as I can get about the longevity of Dexcom sensors, that receiver is still an extra thing to carry around, and that’s not something I want to deal with now. I’ll appreciate the technology behind every “beep” and “boop” that reaches my ears.

I’ll direct all my jealousy toward the people with the spiffiest technology of all: good old-fashioned pancreases.

*Not really, but I’d appreciate it if Bayer or Johnson & Johnson could start working on that.

**I actually have one, but my insurance company won’t cover the strips. I know, I’m shocked, too.