Wild Glucagon Chase

Sometimes, when everything seems to be as stupid as it can possibly get, a few wonderful people step in to remind you that there is normalcy and kindness in a diabetes world run by insurance companies.

Last week, I called my CDE to request a new glucagon prescription. I’d been without one of those trusty red boxes for a few months, and had been reminded by my husband about 673 times to get a new one. My CDE told me she’d send one in to the Walgreens down the street from my house, and I went on my merry way, happy to have half of an annoying errand behind me.

I got a call from her secretary the next day. “It looks like your insurance company isn’t covering your glucagon,” she said. “So Cathy’s going to type up a letter of necessity and put it in the mail tomorrow.”

As distraught as I was at the possibility of fighting another battle with my insurance company, it was good to know that my CDE had my back. The woman never lets me down, and is always there to tell some doctor or insurance company how it is.

When I got to Walgreens that evening, the pharmacist echoed my CDE’s message. “It’s not covered,” he said, and handed me my other prescription. Which had this note on it:

What are these glucose tablets of which you speak?

I didn’t see the note until I got home, and when I did, I laughed. Hard. OTC glucose tablets available for low sugar? That’s like handing someone with a deadly peanut allergy a note that says “Epi pen not covered by insurance (or insuranse). OTC Benadryl available for allergies.”

I couldn’t NOT share this comedy gold with the rest of the world, so I tweeted the picture right away and posted it to Facebook. I expected some commiseration, but my DOC Fairy Godfather would take it a step further. The next morning, I got an email asking for my address. “I can get you some glucagon. It’s $30 on my insurance, I think. I’ll put it in the mail as soon as I can get my paws on it.”

I was touched. Not only was a fellow DOC-er and real-life friend coming to my diabetes supply rescue again, I would also get to participate in some illicit insurance-defying supply-swapping. I would get some glucagon after all — even if it was delivered in the dead of night by a carrier pigeon wearing night-vision goggles!

The next day I went back to Walgreens to pick up another prescription, and saw my favorite BFF pharmacy tech at the window. It was the perfect opportunity to bring up the “glucogen” issue.

“Okay, I know you didn’t do this, because you’re normal and cool,” I began.

“Oh God. What happened?” she asked.

I explained the glucagon and the crazy note, and I told her that if insurance wouldn’t cover it, I’d have to go ahead and buy it myself, because, well, I needed it.

“Of course you need it! What the hell is wrong with them?” Then: “Uh, do you know how much glucagon costs? It’s like 300 dollars.”

She told me she’d try to run it through a discount program. While she did that, I wandered around to survey eye shadow and shake weights. She had a surprise for me when I came back!

“It’s covered!” she called out of the little pharmacist cage. “They made a mistake the first time. I ran it again, and it’s covered! Thirty-five bucks!” We both did a little dance.

It was a happy ending, but I felt a little guilty. Here I’d inconvenienced my CDE, a friend, and all my poor Twitter followers who had to put up with my complaining a few days before. It wasn’t even my insurance company’s fault!

Of course, it was a frustrating experience, but it gave me a renewed appreciation for the helpfully wonderful and wonderfully helpful people in my life.

Here’s hoping I don’t need that glucagon, anyway. I’d rather take the glucose tabs.

Schooled

It seems like the more I learn, the stupider I feel.

That goes for National Geographic specials about the origins of the universe, the mechanics of the Internet, and — of course — diabetes gobbledeegook.

No one knows everything about diabetes management, of course, and none of us is perfect. But when I signed up for a few classes with Type 1 University, I thought I’d just be brushing up on a few of the main points and tactics that I’ve been incorporating into my daily life for the past 20 years. The remote classes are free throughout the month of January, so I didn’t see any harm in spending a few more hours soaking up some of the d-genius of Gary Scheiner.

It’s been two weeks, and I’ve taken two classes, and it turns out I am way dumber than I thought.

Did you know that the Ice Fish has an antifreeze substance in its body instead of blood? Also, I can use my CGM graphs to find out how long my boluses last!

The first class I sat in on was Mastering Pump Therapy. It was great; I received a PDF of the slides for the class earlier in the day, along with a link and a password for the online presentation. Then, I sat and listened and followed along. My husband sat in the next room, where he could hear the audio part of the presentation.

Every once in a while he’d say something like, “I didn’t know that! Did you know that?”

“Well duh,” I’d respond. “Yeah. I mean, no. No, I didn’t.”

I have a dog-eared copy of Gary Scheiner’s wonderful little book, Think Like a Pancreas, so there were lots of familiar points: how to test basal rates, adjusting insulin to carb ratios, etc., but there was so much more to learn. Like how to use temporary basal rates to cover PMS and exercise, and the advantages of dual and square boluses — tools that I’d never really employed before.

This week’s class, Making the Most of Continuous Glucose Monitoring, was even more enlightening, in part because I’ve only worn the CGM for about a year and a half.

It’s not necessarily that I’ve never gotten this information before, it’s just that I haven’t absorbed it all, I think. I’m so used to viewing diabetes education as boring and useless and largely terrifying. Part of my brain is still stuck in the old days, when it was all about remembering to eat a protein exchange before bed and promising to never wear sandals.

Type 1 University is all about strategy, though. I feel like, instead of being confused or frustrated by a slew of information, I’m learning how to pimp my diabetes — or at least my CGM.

Not surprisingly, all the classes for January are full, but I’m totally paying for a few more in the months to come. It’s a stupidly empowering feeling.

*No, no one paid me to write this. But the crate of baby sloths and lifetime supply of white cheddar popcorn I received certainly didn’t hurt.

**Just kidding.

The Beat Goes On

Since there’s nothing more riveting than reading about someone else’s health problems, I thought I’d close out the year with an update on my cardiomyopathy adventures.

Go ahead — pop some corn and grab a beer. I’ll wait.

So, since my last discussion of heart stuff, I spent about six weeks abstaining from alcohol, had two separate tests to determine my ejection fraction, and have received zero definitive answers. But I’m okay.

After a high-risk OB advised me of the dangers of baby-having with Type 1 diabetes and cardiomyopathy, she sent me to another cardiologist for a second opinion. And this cardiologist — who looks like Jodie Foster and sounds like Paula Poundstone, by the way — advised me to stop drinking for several weeks before I underwent more tests, just to make sure that alcohol isn’t a contributing issue for my heart problems.

Three weeks and many mopey evenings later, I visited the office for a MUGA scan, which is pretty cool in an I-can’t-believe-the-things-they-do-with-medicine way. First, the technician inserted an IV in my arm and drew a small vial of blood. Then, he sent me to a waiting room down the hall to watch Divorce Court and drink some water while he zapped the blood with radioactive thingies. Fifteen or so minutes later, he injected the radioactive blood cells back into my arm while I relaxed on a moving table. A giant camera moved around and took pictures of all that nuclearized blood moving through my heart, giving him and my cardiologist a better understanding of its strength.

“This doesn’t look like anything to get too excited about to me,” he said as he scanned the results. “But then again, I don’t have an MD behind my name.”

It was a small assurance, but I’d take it. I went back to speak to Jodie Poundstone the next week, and she echoed what the technician had said, and followed it with: “I don’t have any answers for you.” She didn’t see a significant change from my last echocardiogram, so she wanted to do another test — another damn echocardiogram. Which meant I’d have to go another three weeks obsessing over my health issues without a glass of wine to take the edge off. And in the meantime, no one had managed to get my records transferred from my previous cardiologist.

I was so frustrated. While my friends sat around on the weekends with cocktails and cold beers, I joined with my grapefruit La Croix, bitching to whoever would listen. “It must be SO NICE to be a Doctor! I mean, you don’t have to actually FIGURE ANYTHING OUT, right? You just order tests! And then when you don’t get a clear answer, you order MORE tests! And then you  get a billion dollars!” (I must have been a joy to spend a Friday evening with.)

I went back for my echocardiogram several weeks later, and then back again for another follow-up. Jodie Poundstone still didn’t see any difference — my ejection fraction was hovering in the low 50s, which is, as she called it, “low normal.”

“You’re asymptomatic, and you’re stable, and it doesn’t look like your EF has ever been lower than 49. I’d say keep taking the medication, and it looks like pregnancy is still going to be pretty risky for you.”

It was pretty much what I expected her to say. “Okay,” I replied.

“There’s always adoption and surrogacy and lots of other options for children,” she assured me.

“Yeah, I know. I keep telling my husband we can just order a baby off the Internet.”

“Well,” she said. “It’s not quite that easy.”

Yes, she thought I was serious. She really thought I was going to try to order a human infant from Babies R Us and have it shipped to my doorstep via UPS or StorkExpress or whatever.

It's the widest selection of babies around! On sale this weekend only!

She asked me if I had any other questions. Yes, I did. “Does this mean I can have beer now?” A girl’s got to have something to look forward to, right?

“Yes,” she said. “You can. This is not alcohol-induced cardiomyopathy. We still don’t know what caused it, but it does not appear to be influenced by alcohol.”

And that was that. I haven’t been back to the high-risk OB yet — and I’m not sure there’s any reason to. I’m stable (cardiologically speaking, at least), I feel healthy, I’ve got a solid supply of medication, and I’m okay. Christmas and work and a new house (and diabetes) have kept me busy, and I have a lot of things to be excited about — particularly the TeamWILD WILDfit program I just signed up for.

I may not be able to order a baby on the Internet, but there still are a lot of options out there for me. It could be that I don’t know what I’m talking about, or I don’t know what I’m missing, or I’m in denial, but I don’t feel like I need to have my own biological child, you know? Am I crazy?

Possibly.

In any case, I’m looking forward to 2012 being a relatively calm year (fingers crossed), in which I can get used to new realities and get better at adjusting to old ones. At the very least, I get to ring in the new year with real live champagne.

Secret Judgers, That’s What They Are

It may just be my particularly warped brand of thinking, but I feel like people with diabetes have to deal with a tremendous amount of judgement. There are callous doctors and other health care professionals, there are ill-informed journalists who don’t bother to differentiate between Type 1 and Type 2 diabetes — and the genetic factors that contribute to both — in their “Diabetes Freak-Out of the Week” stories, and then there’s that dude in your office who expresses concern any time he catches you eating anything other than chicken broth or watercress.

This may be where my paranoia starts to show itself, but I’ve recently identified another source of diabetes judgement: the people who wouldn’t dare question your eating or health habits to your face, but are full of stories of those other diabetics they’ve known, The Ones Who Didn’t Take Care of Themselves.

“That’s great that you’re checking your blood sugar,” they’ll say. “I went to middle school with this girl who had Type 1 diabetes, but she had it real bad and she had to eat candy in class sometimes. She was always in the hospital.” (These stories may or may not end with the diabetic in question losing the function of one or more organs or limbs.)

There was a time when I might have gone along with this. I’d nod, and offer up some snippet of my daily habits that would portray me as the Diabetes Superhero we all aspire to be. “That’s too bad,” I’d say. “I check my blood sugar at least 37 times a day. And I never have to eat candy.”

But the more people I know who are living with diabetes, the more I recognize that even quasi-successful diabetes management is a full-time job, the less tolerance I have for these stories of anonymous terrible diabetics of the past.

And if these people are telling me about what constitutes good and bad diabetes care in others, what are they telling other people about my diabetes management skills — or lack thereof?

“I knew this girl named Jacquie. She spelled her name really weird and one time she drank whiskey and got stuck in her bathtub. And she has the bad kind of diabetes, so she should know better.”

I realize the people who share these stories are only trying to relate — to broach what can be an awkward topic. I get it, and I appreciate that.

But (and this may be all I need to start saying to people), diabetes is fucking hard, yo. You may think you’re observing a person who’s neglectful, or lazy, or irresponsible — and all of that may be true. What’s definitely true is that you’re observing a person who is struggling to manage a very complicated (and expensive) disease with a bazillion counter-intuitive rules and exceptions to those rules. Diabetes is like the English language of diseases — it’s ugly and it’s hard to understand, and the things that you’d expect to make sense don’t.

"Young lady. Do you know how stupid you look with that cell phone on your hip?"

I don’t have an answer for these people. I wish diabetes was predictable and easy enough to control that we could have distinct categories for the “good” PWDs and the “bad.” That way, successfully managing an active life with diabetes would be like paying taxes — either you did it or you didn’t. And if, say, you went a few years without doing what you were supposed to, there was some 1-800 number from a sign on the side of the road that you could call to make good with the Gods of diabetes. An insulin and carbohydrate payment plan, maybe. Anyway.

It’s exactly this confusion and (perhaps unintentional) judgement that makes me want to keep trying to explain life with diabetes to as many people as I can. It can be frustrating, but it’s usually worth it. Hopefully, people won’t judge me — or anyone else — for not being perfect at diabetes management, and we won’t judge them for not knowing how complicated it is.

A Token of my Affliction

Today’s 11/11/11, and people are bouncing around for all sorts of reasons: it’s Veteran’s Day, it’s another Blue Friday, it’s a lucky day to get married or buy a lottery ticket or go for a no-hitter.

It’s extra special for me, though: today marks 21 years of living with diabetes. As we say in the DOC, my diabetes is officially old enough to drink, and I’m amazed and grateful to have made it as far as I have without any major issues [knock on laptop].

This time last year I was roaming around the streets of Savannah with my husband and some out-of-town friends. We popped into a little artists’ co-op store to gawk at all the giant art glass creations and marshy landscape watercolors. There were big aluminum sculptures of birds and nativity scenes made of driftwood. I was just about to give up on all the expensive objets d’art when I spotted a wee little something in a glass case.

It was a simple silver ring, tied in a knot. I tried it on and, incredibly, it fit. (I have hands like hamster paws.) I turned to my husband. “I think I’m going to get this. This’ll be my 20-year diabetes anniversary gift to myself.”

The ring was by far the cheapest thing in the store, so even though it was hand-crafted, I half expected it to crack or warp or turn green after a few months. But it hasn’t. As I type this, it’s still winking at me from my right ring finger.

I’m wearing blue today, my pump’s on my pocket and the bump of my transmitter can be seen though my sleeve. I’ve got my trusty utilitarian alert bracelet on my left wrist, but I feel like my little 20-year ring is my secret diabetes trinket. Like diabetes, it’s there, but it’s not always noticeable. It’s become part of my everyday wardrobe, so to speak, but it’s not the focal point of what I wear. And, also like diabetes, it’s a never-ending loop.

Unlike diabetes, I hope it lasts for a long time.

 

Cardio-pain-in-my-opathy

I don’t know where this story begins — or ends — so I might have a hard time telling it. This could be long and whiny, but here goes.

I was diagnosed with some sort of magical mystery cardiomyopathy about a year and a half ago. It was caught randomly, after I visited my primary care physician with an intermittent chest pain that got worse any time I breathed in deeply. He couldn’t (and still can’t) figure out what it was, but he sent me for some routine tests just to rule out the really serious stuff.

I wrote about the stress test and echocardiogram that followed, both of which came out . . . funky. Funky enough to necessitate a cardiac catheterization, which was bizarre and slightly painful, but confirmed that I no, I was not suffering from Coronary Artery Disease. Instead, my heart was just following in the footsteps of its owner: it was a little on the lazy side, for no particular reason.

The super-aloof cardiologist I was seeing pulled a few theories out of his high-falutin’ backside: maybe a virus had weakened my heart. Maybe it was diabetes. Maybe I’d never find out. He handed me a prescription for lisinopril and sent me on my way, with instructions to come back in 6 months. After another echocardiogram half a year later, not much had changed. My ejection fraction was still hovering in the low 50s. Dr. Distant handed me another prescription for carvedilol and asked me to come back in another six months. I bet you can’t guess what happened.

My condition was virtually unchanged. I still had no symptoms of the cardiomyopathy itself, but when someone tells you that your heart’s not doing what it’s supposed to, you take their word for it and do whatever they say. The cardiologist instructed me to double my dose of carvedilol (which was tricky, because my blood pressure is already quite low, and carvedilol and lisinopril lower it further) and to plan on taking it for the rest of my life. Oh yeah, and come back for yearly echocardiograms.

Then he asked me if I had any questions. “This medication,” I began, “I know you can’t take it when you’re pregnant. What do I do if I want to start planning family stuff?”

He sat there for a second and exhaled slowly. Clearly, this was the most boring case of cardiomyopathy he’d ever seen. “Well, just let me know when you start thinking about it and we’ll figure it out then.”

“How about now?” I asked. I ain’t getting any younger, after all.

“It can be unsafe to discontinue this medication. If you get pregnant, just stop taking it.”

I didn’t realize how terrible this advice was until I relayed it to my CDE and the endocrinologist she works with — both of whom are affiliated with the same clinic as my cardiologist. (Mayo Clinic!) They both looked at me like I was crazy, and I could tell my CDE was pissed at this cardiologist. “This is not acceptable,” she said. “This is an important issue in your life and you deserve answers.” She recommended I see a high-risk obstetrician to seek their opinion. So I made an appointment — for six months later.

Fast-forward to last month. Kick-ass CDE had made copies of all of my diabetes and cardiology-related records and had given them to me to bring along, so the OB could get a clear picture of what I’d been dealing with over the past year. I waited in a room with half-a-dozen enormously pregnant women, and was then called back to speak with a nurse. She asked me a ton of questions and we went over all the paperwork I’d brought along. She explained the risks of pregnancy and Type 1 diabetes — most of which I was familiar with, just not in such graphic terms — and then told me she’d send the doctor in to give me an official recommendation.

The OB was wonderful and thorough and understanding and supportive. She, too, detailed all the risks of pregnancy, but withheld some of the horror stories.

Then came her recommendation. “If it was just the diabetes we were dealing with,” she said, “I’d say go for it. But this cardiomyopathy thing makes it a lot more complicated. I can’t tell you ‘don’t do it,’ but I can tell you that there’s about a 20% chance that the extra strain on your heart from a pregnancy could leave you on a transplant list. So I would think long and hard about whether you want to do this.” (And that’s a whole other blog post.)

She, among others, wasn’t satisfied with any of the answers I’d received from my cardiologist at Mayo, so she referred me to a group in the same hospital (“All the doctors I work with got their stents there!”)

That appointment happened about a week later. To say the least, I was deflated by the news I’d received from the OB, but I was still determined to figure out what the hell’s wrong with my heart, so I went in with only as much optimism as I could muster. That cardiologist was pretty cool. She didn’t have my records, but I detailed all my adventures for her and she checked me out and listened to my heart.

Then came her recommendation. “I don’t think this is diabetic cardiomyopathy. Your A1c is good and you’re so young, so I think it might be a virus. Do you drink alcohol?”

Uh, yes.

“There’s a chance that this damage to your heart is caused by alcohol. I’d like to do a more accurate test of your ejection fraction in three weeks. Stop drinking, and we’ll see if there’s a difference when you come back for the test. If you’re better, that may be our solution.”

She might as well have ordered me to follow the grub milkshake diet plan. Three weeks without drinking, fine. But the rest of my life? Without wine or beer or a delicious Mimosa? You know that part of A Christmas Story, where the Bumpus’ dogs take the turkey and the Ralphie voice-over laments all the delicious turkey treats they’ve lost? That was what went through my head: “No brewery tours! No wine and cheese parties! No champagne toasts! No beer-and-a-hot-dog at the baseball game! It was gone — all gone!”

Either of these recommendations — not having my own biological children and possibly going dry for the rest of my life — might have been easy to absorb had they not come within days of one another. But suddenly, I felt like all these things that “normal” people get to do were being snatched away. Next they were going to tell me I’d have to start counting carbohydrates and sticking needles into my own body.

I’m not used to being sick in a way that I can’t keep tabs on every few minutes, and I’m not used to being told that there are things that I really can’t — or shouldn’t — do. I’m also not used to being sick in a way that I don’t even feel. I mean, I think I feel pretty healthy. Compared to a night of low blood sugars, this cardiomyopathy is nothing.

I guess I feel like I’ve tried so hard to be healthy, and it’s still not enough. Part of me really hopes that this condition is caused by diabetes. That way, I can at least fence it into the same area of “ShitI’ve diabetes has done wrong.” I already feel guilty enough about the years I spent in college neglecting my blood sugar levels, I don’t want to have to feel guilty about the keg parties, too.

My next test (it’s called a MUGA scan) is scheduled for Tuesday. I’m nervous, but I know I need some more answers. As long as they don’t tell me to give up the Diet Coke, I’ll probably survive. I hope.

While I Was Sleeping

One of the most absurdly frustrating things about diabetes is how much stuff happens when you’re sleeping. Or, you know, trying to.

Most of us don’t eat when we’re sleeping, or exercise, or take insulin. Mostly we just lie there and dream about cures and cupcakes and not being able to find our lockers. But those hours between 11:00 at night and 7-ish in the morning can be so damn volatile.

My Continuous Glucose Monitor, as much as I love it, can be part of the problem. Take Tuesday night — I went to bed relatively early, all nervous about a huge presentation I had the next day. It felt like a normal night’s sleep, until I woke up in the morning and checked my blood sugar. Four-fucking-hundred and 58 mg/dl. 458! The highest number I’d seen since, I don’t know, 2008?

Here’s the best part: the reason my blood sugar was so high was because I — or some naughty diabetes fairy — had suspended insulin delivery. I hit the escape button on my pump and there it was on the screen: “SUSPENDED AT 2:47 A.M.” I’d gone over 5 hours without a drop of insulin.

That's me and my diabetes, just trying to get through the night.

I scrambled through my head, trying to piece together the events that might have led to this nonsense. I didn’t remember being up at 2:47. I hadn’t gotten up to use the bathroom or anything. And my husband had been out of town, so there’s no chance he’d woken me up. Then I looked back at my CGM graph and my alarm history, and noticed that I’d been hovering around 78-82 in the hour before that mysterious suspension — right around my “low” alarm threshold. (I should mention that, at that moment, my CGM read 126 with two down arrows. Lovely.)

So here’s my theory: I’d been sleeping soundly, and my CGM had not. I must have reacted to meaningless alarm #17 by simply turning my pump off. Since I don’t even remember doing it, I’m sure it wasn’t intentional. My diabetes reptilian sleepy-time brain probably thought it was silencing the alarm, or adjusting the basal rate, or saving the world from a nuclear apocalypse.

Of course, I bolused immediately after I saw that 458. A few hours later, I was back down to 134 and feeling like someone had smacked me in the head with a duffel bag full of pig pancreases. But my big fat presentation was still looming, so I drank as much water as I could stomach and put my best “normal person” face on.

For so many of us with diabetes, sleeping is one of the scariest things we can do. And for me, the CGM serves as a security blanket. I’ve never had to consider the idea that the thing that’s supposed to help keep me alive and well could annoy me to self-destructive behavior.

As it turned out, that work presentation went swimmingly, and I’ve managed to make it through the past few nights without turning anything off or pulling anything out. I’m counting myself lucky, and sleeping in restraints for the rest of the week.

What the Heck Does “Hungry” Mean?

When you’re me, and the weather starts to cool off, and you start to realize that a lot of your clothes from this time last year don’t fit so well, and you decide you want them to fit well, and you resolve to take steps to make that happen, diabetes can get in the way. Surprise!

Sensible, normal-people healthy weight advice always includes this nugget of wisdom: “Pay attention to your body. Eat when you’re hungry, and stop eating when you’re full.” It’s exactly the kind of “no duh” advice that works for people who don’t have diabetes, but takes a little extra work when factory-produced insulin gets thrown into the mix.

Carbohydrate exchanges and meal plans (or the lack thereof) for people living with diabetes are different than they were 21 years ago, when I was diagnosed. See, back then, no one really gave a crap if you were hungry, or if it was dinner time and all you felt like eating was a couple of crackers. Eating very specific things at very specific times of day was part of diabetes management, and there were (and still are) insulin doses to account for, plus habits, hormones and daily activities.

So, if I had given myself an injection for 55 grams of carbohydrates for lunch, and I realized I wasn’t hungry after ingesting 30 of those carbohydrates? Too damn bad. I would have to finish that peanut-butter-and-honey sandwich anyway, or I would suffer the consequences. And if I came home from school starving, it was the same idea: I had a very limited set of options. I’d eat what I was supposed to, and then I’d distract myself with something else. (Of course I never snuck an ice cream sandwich or an extra bag of microwave popcorn without accounting for it. What kind of diabetic teenager would do such a thing?)

Zap back to 2011, a time when technology, fast-acting insulin, and a better understanding of how carbohydrates work has given us all more choices when it comes to food and diabetes. And I’m still complaining.

I have a hard time eating less, because I feel like I honestly don’t know what it’s like to be plain old hungry. To me, hungry — even just a little — means I’m on the road to hypoglycemia hell. It’s always been my first symptom, so I take efforts to avoid it. Which means eating more.

At the same time, I know all too well what it feels like to be obscenely, nauseatingly full and see a down arrow on my CGM screen. These occasions call for one or more post-giant-meal snacks, which always leave me feeling like Adam Richman at Willy Wonka’s Chocolate Factory — without the encouraging crowd.

Then there’s the otherworldly hunger and subsequent binges that tend to accompany moderately low blood sugars, especially when they strike in the middle of the night. There’s no rationalizing with that kind of urge and, in the face of what feels like certain impending death, nutritional awareness disappears like three bowls of Cocoa Krispies and a liter of juice.

I’m fully aware that these things can be managed. All I have to do is read a few books about human anatomy and metabolism and test my basal rates and check my blood sugar more often and count carbohydrates more accurately and — is anyone else hungry, or is that just my brain imploding?

Your Friendly Neighborhood Diabetic Foot-Wound Center

The real estate gods and the chronic disease gods must be having a grand old time in whatever bar they’ve been drinking at these past few years.

I present to you Exhibit A, the building I walk past at least once a week:

Aw, the sign lost a letter. Must not have been taking care of itself.

That, as you can see, is the Diabe[t]ic Food-Wound Center, located two blocks from my home. Some might say I should consider myself lucky. If I find myself with a festering abscess on my heel, or if I sustain injuries from a over-zealous razor-wielding pedicurist, or if my crappy little dog gnaws off my toe in the middle of the night, I can just hobble around the corner!

To me, though, the Diabetic Food-Wound Center is the embodiment of all that I hate about diabetes. The place is ugly as hell — an eyesore, if you’ll forgive my pun. It looks like the kind of place one would go to purchase a diabetic foot wound, if such a thing were possible (“Ulcers! Half off! This weekend only!”) Every time I pass it, I hear the voices of a hundred members of the diabetes police, chanting horror stories about kidney failure and lost limbs. (It bothers me even more than the Rectal Surgery Center that’s on the next corner. That’s saying something.)

Up until a few weeks ago, the side-yard of the building was populated by a group of rusty, folding chairs that surrounded one of those smokers’ outposts. I always imagined all the Diabetic Foot-Wound Center employees sitting in the afternoon heat, complaining about their “noncompliant” patients, eating pork rinds and puffing on Marlboro Reds.

Even the name of the clinic make me itch: Diabetic Foot-Wound Center. Does that mean the center is diabetic? The foot-wound? Why is foot-wound hyphenated? And whose idea was it to add that disembodied foot to the sign? Isn’t that in poor taste?

The good news is, I’m moving in a couple of weeks, so I won’t see the Diabetic Foot-Wound Center quite as often. Plus, I’m getting a back yard and a front porch and a fireplace and an extra bathroom.

I’m getting the hell away from the ol’ DF-WC, and I’m taking my perfectly healthy feet with me.

Learning the Language

There is a language that comes with diabetes. It’s not all terms like “ketoacidosis,” “carbohydrates” or “glycated hemoglobin,” although those have their places. “Glucoaster” and “rage bolus,” too. The language I’m thinking about — one that I’m still learning — isn’t one that was taught to me or my family when I was diagnosed. It’s one that I don’t think I even caught on to until a few months ago.

When I tell someone that I was 12 years old at the age of my diagnosis, that person’s first response is usually something like, “Oh, that must have been so hard for you.”

I don’t know how to react to that statement. I mean, yes, it was hard — probably more for my parents than it was for me. Mostly, I just remember how weird it was.

It was weird because I had no way to identify the new things that were happening. In my prepubescent brain, there was no word to describe what it felt like to hear my Mom getting hung up on by insurance companies. There wasn’t a term for being force-fed a morning protein exchange in time to catch the bus. I had friends with diabetes, but I didn’t know how to ask them about that terror that rises when you’re on the way to the endocrinologist and you haven’t filled out your log book in 6 weeks.

The language — the reality — of diabetes that I learned early and lived with for so long was full of “shoulds”, “can’ts” and unspeakable “what-ifs.” Diabetes was my thing to live with, and it was up to me understand that thing in the terms that had been presented to me: certain doses of insulin at certain times of day, paired with certain foods and kept track of with stabs and sticks and pens and paper. I either did it right, or I didn’t. And if I didn’t, I certainly wasn’t interested in talking about it.

I feel like I didn’t even start stumbling over the real words until a few years ago. In fact, I remember the first thing I told myself in my new found diabetes language: “If I check my blood sugar, and it’s high, I don’t need to get upset.” I don’t even know where the voice came from, but I instantly recognized it as a completely new way of taking care of myself.

All this time, I’d been shouting myself down. Berating myself for not “doing it right.” Entertaining myself with worst case scenarios. Worst of all, changing the subject anytime my well-being — mental or physical — came up with the people I loved. I’d been speaking to myself, and my disease, in a way that neither of us really understood, and it wasn’t doing anything for either of us.

I’ve said it a million times, and I’ll say it again: Thank God for the Diabetes Online Community. As I began to eavesdrop on other people’s diabetes conversations and read other people’s diabetes thoughts, new phrases started to come to me. Sentiments that were so obvious, but that I’d never pieced together in my head. “Diabetes sucks ass.” “My blood sugar is 319 and I don’t know why, and it’s not my fault.” “There are used test strips everywhere, and that’s kind of funny.” “I’m afraid, but I’m not sure of what.”

I wish I could go back to 1990 and hand my 12-year-old self a glossary. But since I can’t, I feel compelled to bring all the new PWDs that I can into the conversation. I’m glad that so many of us are speaking — loudly and frequently — in a language that makes sense. I can’t wait to keep learning.