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Diabetes In Boston

This week I’m at the Leadership Institute for Academic Librarians (LIAL) at the Harvard Graduate School of Education in Boston, Massachusetts. This is the 15th year of the LIAL, and the Class of 2013 is made up of roughly 100 librarians from all over the world. I can say “world” because the group is made up predominantly of librarians from the United States, but also Canada, China, Saudi Arabia, South Africa, and Trinidad and Tobago.

Welcome to Boston

The first thing I’m not supposed to do is tweet about LIAL. Or Facebook about LIAL. Or probably write this blog post about LIAL. So I won’t share all of the intimate specifics of LIAL, but I feel that I have an obligation to share some of what I am experiencing without necessarily divulging the deep, dark, sordid secrets of my fellow librarians.

Because diabetes is a part of every single thing that I do, I don’t feel shy about sharing some of the other sides of my life every once in awhile. How am I ever going to be able to sell that line about “I am more than just my diabetes” when I’m not willing to share more than just my diabetes? Besides, there have been some diabetes moments, so it’s not all librarian mumbo jumbo. Which is lucky for you, because that means you get to learn a little bit about Martin Librarian as well as the usual rants and raves about my living with diabetes. Consider it as entertaining as when someone farts in church while the preacher is taking a breath mid-hellfire and brimstone. I will be that fart of fresh air for you.

Like yesterday, when I was getting on my plane in Atlanta, a nice couple in the front row reached out to me and pointed out my Medtronic insulin pump that I had clipped to the outside of my jeans pocket. Turns out they work for Medtronic (or did, I’m not sure…boarding the plane was a little chaotic). There wasn’t much time for chatting, but they were very happy to see someone wearing a device that they are so proud to have been a part of developing. That made me happy. Not so much because they work for Medtronic, but just that MY diabetes made someone else’s day. Because, let’s face it, sometimes it’s a real dump in the pants.

(And that’s the 2nd fart joke I’ve made in one blog post. I should be ashamed of myself. I’m not. You’re welcome.)

Since I arrived in Boston, I’ve pretty much been going nonstop. So far I’m managed to break one iPhone case, one set of earbuds, discover that I didn’t bring enough socks, or any workout clothes, I didn’t complete near enough reading to feel prepared for class, and that the minibar is no substitute for a fridge in a hotel room. On the positive side, I won an argument versus a cab driver with a stereotypical Boston bad attitude, found an honor system book sale on the street, and saw socks in a store window tonight that have stripes made out of eff words on them. I’m sorry if you’re easily offended, but I WILL be going back to get me a pair tomorrow when they are open. You don’t let that kind of opportunity pass you by.

Several times so far this trip I’ve been asked about diabetes, which is awesome. Probably because I have it tattooed all over me. Yesterday, a nice woman that I was sitting next to on the plane from Atlanta to Boston asked me about the differences between multiple daily injections (MDI) versus using an insulin pump for people with Type 1 diabetes. Today, after getting off of the phone helping out a fellow T1D with a diabetes challenge, a librarian colleague and I had a conversation about Students With Diabetes and my passion for helping people with diabetes, and especially my unique perspective as a medical librarian with Type 1 diabetes. I absolutely love it when my diabetes world intersects with the real world in a positive way, and that I’m making progress integrating it with Martin Librarian world.

I also sat next to a nice librarian lady today (named Ripple, which may be the coolest name ever) who had a Mickey watch, same as mine. What are the odds? She’s the first person I’ve ever met in the wild with a Mickey watch like mine, and who isn’t six years old.

Mickey watches at LIAL 2013

I’m learning a lot this week, and will share more as I can. There is a TV inside the mirror in my bathroom, so I’m going to go watch SportsCenter now.

TV in mirror

(3rd fart joke. You didn’t even see that one coming!)

Dog Food Soup

Marker. Brand. Name. Characterization. Classification. Hallmark. Identification. Number. Stamp. Sticker. Tag. Ticket. Trademark. Type. What do these things have in common?

They are all labels. Each and every one of us makes our way in a world that is riddled by an incalculable number of labels. Everything that we interact with is dictated by some form of label.

We go to the grocery store and we make decisions about what to buy based on a number of different labels. We look at brand names, price, nutritional info, ingredients, and even if the product has an appealing design element to its packaging, and we make a decision about whether or not we want to purchase and consume it or not. Let’s face it. We would probably buy dog food and eat it if the labels passed our various conscious and subconscious criteria for consumption. I’ve seen some cans of dog food where the photo looks just as appealing as Campbell’s Chunky Soup. But don’t take my word for it…

Dog Food Soup

Seriously?! Prime cuts in gravy! And it even has an easy open top! I’m sold.

I hear my fellow people with diabetes talk about labels quite often too. Type 1. Type 2. Juvenile. Adult-onset. LADA. Overweight. Underweight. High. Low. Insulin. Pills. Pump. Pens. Pricks. Gels. Tablets. Injections. CGM. Sick. Well. Brittle. Compliant. Non-compliant. Unaware. DKA. BG. A1C.

Diabetes Beans

So let me get to the beans of it all. I don’t understand the anger that some people have with all of these labels. We live with them every single day, and we make decisions based on our understanding of labels on a near constant basis, but as soon as someone attempts to label us, makes a mistake, tries to empathize, or even tries to give advice (even if it is misguided), we get our underwear completely in a wad and pitch a fit. Ever heard any of these?

“How dare that person give me advice about MY diabetes? Telling me what I should do. They don’t know me! They can’t imagine what I have to deal with everyday!”

“How dare that person compare me to those fat, lazy people with diabetes. They chose to be that way! I didn’t choose this! This chose me!”

“Yes, I take insulin. NO! I don’t have the BAD kind of diabetes!”

“How sick am I? HOW SICK AM I?!”

There are all these things that people say that we just get so bent out of shape about. Newsflash: People are stupid. I mean, we’re smart. Sometimes. But we can be really dumb. Every single one of us. We often have no idea when we should just keep our mouths shut because we don’t have enough background information to know any better. So we say something. Sometimes with the very best intentions. And we make mistakes. And not one of us is immune to it.

Fact #1: Nobody knows your diabetes better than you. Nobody. Not even your doctor.

Fact #2: That’s okay.

We want so much to not be labeled. We don’t want to be judged. We don’t want to be considered sick. We work so hard on our diabetes, our weight, our outfit, our hair, our makeup, our jobs, our school, our families, and whatever else we define ourselves by that we get really upset when someone else doesn’t understand or appreciate what we go through and how hard we work each and every day. We get even more upset when they get it wrong.

But if you think about it, can you really blame them? They don’t know your situation anymore than you know their situation. I have to tell myself that all the time. I only know what I can see, and what that person is willing to share with me. In reality, that is only the tip of the iceberg to who that person is.

I talk to so many people with diabetes. People from all walks of life. There are always a few that have a chip on their shoulder because they are one type of diabetes and are angry at people with a different type of diabetes because they don’t want to be compared. Or maybe they are just angry themselves, and are projecting. I don’t know. I’m no psychologist.

So the Type 1 accuses the Type 2 of doing it to themselves. It’s their fault that they have Type 2 diabetes. They ate themselves into that situation, when they should get up and move around and stop being lazy. Anyone with Type 2 diabetes, it’s their own fault. And they want the two types of diabetes to be differentiated even more, calling one something completely different than the other, because it’s an absolute travesty for someone with Type 1 diabetes to be compared to someone with Type 2 diabetes.

Or maybe the Type 2 doesn’t understand why the Type 1 chooses to give themselves insulin when they could just exercise and eat better, and stop eating sugar, and not have diabetes anymore. That person with Type 1 is just lazy, and by using insulin is taking the easy way out. That person with Type 1 diabetes is such a disgrace, and it is a low down dirty shame that they are compared to the hard working Type 2’s in the world! The person with Type 2 diabetes wants the two types of diabetes to be called something completely different, because they don’t want to be compared to those self-righteous know-it-all good-for-nothing lazy Type 1’s.

The reality is that Type 1 diabetes is an autoimmune problem, where the body’s immune system is attacking insulin producing cells in the pancreas, rendering the person incapable of producing insulin on their own. This is why a person with Type 1 diabetes has to take insulin via injections or a pump, because they have no way to produce it themselves, and without insulin to lower their blood glucose levels and convert carbohydrates into energy, their BG levels go sky high.

Type 2 diabetes is where the body has become insulin-resistant; it doesn’t want to process the insulin it is producing properly, resulting in higher BG’s. Yes, this can sometimes be controlled by diet and exercise, but sometimes it requires medications as well to make the cells in the body less resistant to the insulin that is being made. In some cases, a person with Type 2 diabetes has to eventually take insulin injections too, similar to a Type 1, because they can’t produce enough insulin themselves that meets the requirements of their insulin resistance.

Ready to have your mind blown? Not every person with Type 2 diabetes is overweight and lazy. Just like not every person with Type 1 diabetes got there by eating too much cake.

Cake is delicious. Don’t ruin it with diabetes.

It’s just labels. It means nothing. It doesn’t matter what can we come in, Alpo, Campbell’s, Type 1, or Type 2, we’re mostly all the same inside. We’re a little more of this, and a little less of that. Sometimes we’re better for one purpose, sometimes another. Sometimes we fit in a can perfectly, other times we’re a mixture and don’t make any sense at all.

But we’re all in this together. We don’t have to understand each other completely. We’re lucky if we understand each other a little. We do, however, have to understand that diabetes is not our fault. Forget the science. Forget the stereotypes. Forget what you think you know about diabetes. You know YOUR diabetes. If someone makes a mistake, gives you wrong information, makes assumptions about your situation, try to walk in their shoes. Maybe they are just trying to help. Maybe they are trying to make sure you don’t feel all alone. Or maybe they are the ones that don’t want to feel alone.

Or maybe they are just an a-hole. Yes, there are those people in the world too. However, I’ve found that most people are good. Most people are kind. Most people do legitimately care if you give them a chance, even if they don’t completely understand.

Be patient. Be kind. Accept that we don’t know everything, or the same things. We have much more in common than we often realize, and we’re certainly much stronger together than we are on our own. Diabetes, regardless of type, is much easier to deal with in a community of people who understand some of the nonsense of pricks and pinches and pills and possibilities.

Once you get past the labels, we’re really not so different. Kind of like dog food soup.

Bullets: Rat-a-tat Tat

I’ve been traveling a lot lately. And working. And traveling some more. If my counting is correct, this past weekend was my 8th trip somewhere out of town in the last two months, after weeks of prepping for said travel, and I still have one more trip to go.

8 Fingers

I’ve forgotten what weekends at home are, but if those mythical creatures still exist, I’m certainly looking forward to one someday soon. I’ve got a lot of catching up to do, and so much that I want to share with all of you that still read my blog and haven’t given up on me while I’ve been M.I.A. the past few months.

Overall, the past several months have been a success, made up of both work and diabetes, and including a lot of reading, thinking, meetings, planning, traveling, juggling, tightrope walking, backward and forward somersaults, and as much fun as there has been time for in the three ring circus that is my life these days. Here are just a few highlights:

  • I took a trip to Seattle, Washington for the Medical Library Association conference. I had never been that far west or north before, and it was a mind-boggling and delightful experience. Jet lag sucks though.
  • I attended the inaugural Students With Diabetes National Conference in May, and it was one of the most incredible three days with diabetes that I’ve had in my entire life. Ever. I’m still processing my thoughts on it, but what is being done with Students With Diabetes and Bringing Science Home is nothing less than life altering.
  • After working every day (and night) since the end of February to plan a statewide meeting of medical librarians, I was elected President of the Florida Health Sciences Library Association. I’m extremely proud of and excited to lead this group to some grand things for medical libraries in Florida over the next year.
  • I’ve finally decided that I’m all in for D-Ink. I just have to find someone who has the skill to draw what I want. Will share my thoughts on that process, which may appeal to some of you who are also considering D-Ink.
  • New diabetes technology is out and about, and I’m drooling over it. However, with every new invention to improve the lives of people with diabetes, there comes a list of challenges.
  • Traveling and eating out so much has left me still struggling with my weight…again. It’s a recurring theme, really. I wanted to be lean by Friends For Life this year, but alas, that’s next week, and I don’t see myself losing the equivalent of a toddler between now and then. I’m exploring some options of what to do about it, and trying to figure out how I can get into a routine that isn’t so detrimental to my bottom line, so to speak.
  • Through everything, I’m still working to stay on top of my world with diabetes. 60% of the time it works every time. Wearing my Continuous Glucose Monitor (CGM) on a constant basis is still probably my biggest diabetes challenge, for a host of different reasons.
  • Also, I’ve spent some time recently shepherding someone near and dear to me who is newly diagnosed with Type 1 diabetes. It has left me with a lot of thoughts about how we, both as patients and parents of children with diabetes, react to change and the news that our transmission has decided that it wants to be a “stick shift” rather than an “automatic.”

More to come on all of this, but I’m just excited to get back to writing and sharing and communicating with everyone again.

Here’s a picture of me and Sara at the Students With Diabetes National Conference. See also: Poster children for Type 1 diabetes. (You read it here first.)

SWD - Sara & Martin - May 2012

Twas A Gummy Bear Night

Twas a night before Christmas, when all through the house
Not a CGM was beeping, all sensors were out.
The transmitter was stashed amongst the pump supplies with care
In hopes that my insurance company soon would say, “Clear!”

The gummy bears were nestled all snug in their bag,
Patiently awaiting for diabetes to attack.
The cat under covers, the dog taking a nap,
It was only a matter of time before diabetes would snap.

When just down the hall there arose such a clatter,
I sprang from my bed in a soaking wet lather.
Panicked and stricken, I searched for my glasses,
Hoping to high heavens my feet weren’t molasses.

The moon in the window lighting my way
Leading me to the kitchen where the gummies await.
Like a chorus of Hungry Hippos my teeth were a chatter,
Am I low? Or just cold? Truthfully, it doesn’t matter.

Flicking on the lightswitch in a soaking wet fury,
“Get in my belly you gummies!” I said, a bit slurry.
More delicious than glucose tabs and easier to swallow,
The red ones are best, and what makes the clear ones so hollow?

The clock ticks, the minutes pass, waiting for a fixin’
It doesn’t seem to be working, my brain says as I listen.
I think, “Let’s chase the gummies with a bottle of soda!”
“Diet, that’s not,” a voice says, kind of like Yoda.

As the bottle is emptied I start to stop shaking,
This all will have consequences in the morning upon waking.
Tired and worn out, I drag my carcass to bed,
Where visions of semi-coherent boluses dance in my head.

And then, in a moment, the sun starts to shine.
Morning already?! It was only just five!
As I sit up in bed, and try to shake off the fog,
I realize I feel like a rotting old log.

Time to get dressed, from my head to my foot,
“I think I wore these clothes yesterday,” I think as I look.
A bundle of sweaty clothes, a shower is needed.
What happened last night, and why am I still seated?

I make it down the hallway, shuffling feet in my slippers,
When all of a sudden I spot movement that’s chipper!
When, what to my sleepy-filled eyes should appear,
Those gummies are partying, and one of them has a beer!

I shake, and I tremble, and rub my eyes in disbelief.
A gummy bear palooza, in MY kitchen sink?!
I grab my pump quickly, and notice the last,
A bolus, SWAG-worthy, taken blindly and fast.

I reach for my meter, and check without fear,
Hoping that some sense in those numbers will appear.
Double-digits, that figures, at least now I know
Those gummy bear phantoms were all because I was low.

Gummy Bears
Photo by Pato Garza (CC license)

Never Trust A Sweet Potato

Wednesday was one of the hardest days with diabetes I’ve had in awhile. Well, at least since this day, which actually wasn’t that long ago. But anywho…

This episode began on Tuesday night, when I noticed that my blood sugar was stubbornly high after having dosed enough insulin to take down a small rhino. I thought I had dosed correctly for the sweet potato that I had for dinner, but apparently sweet potatoes put on a good show, with their sweet and seductive scent, but they are actually full of lies and half-truths when it comes to their nutritional info.

Lying Sweet Potatoes
This is a Public Service Announcement: Sweet potatoes are not to be trusted!

I woke up with a BG of 235 mg/dl on Wednesday morning, which I attributed to the fact that I probably didn’t dose enough before bed. Not a huge deal, go-go-gadget correction bolus, and it was off to work I went.

The correction bolus should have done the trick. Instead, my BG wavered a little, but mostly it just hovered in the mid 200’s all morning. For some, that isn’t that high and they can go all day long in that range and not be out of sorts. For me, it made me want to dig a hole and throw myself into it. I’m accustomed to numbers closer to the 90-100 range. I had a headache, I was nauseous, I felt like someone had replaced my blood with syrup, my insides ached, I had no energy, I wanted to go lay down, and all I could focus on was how awful I physically felt.

After giving the insulin plenty of time to work, and still being high, I corrected again. I wondered if maybe the morning BG spike had also included the dawn phenomenon, along with the errant sweet potato bolus, so maybe that was why my BG was being stubborn and not dropping down to normal.

I tried to get into working and distract myself from the awfulness I was feeling, and give the whole situation a little time to work itself out. Apparently it worked too well, because by lunch I had dropped down to 45, after ignoring my CGM alarm and then getting busy and forgetting about it. For future reference to you CGM-ers out there, don’t do that.

Lately I’ve been working through lunch, only to look up at the clock and realize it is mid-afternoon and I haven’t stopped to eat yet. Since I was at 45 and low brain had kicked in with full force, I quickly grabbed some chicken nachos for lunch. I figured there would be enough carbs in that to cover the 45, but not so many that I couldn’t easily manage a proper insulin dose for it.

I thought I dosed properly for it. I even looked up the nutritional info online. Still, I was back up to 245 by the end of the workday, and also back to feeling like someone had replaced my insides and physical well-being with frustration flavored Jell-O.

I remained sky high for the rest of the afternoon and well into the evening. By 8 o’clock that evening, I was physically ill. I thought I was dropping at one point, and that it was safe to eat and dose for dinner, so I had one serving of eggplant parmesan so I didn’t skip a meal and end up low again. Unfortunately, the eggplant parmesan had much more of an effect on my blood sugar than the insulin I had dosed to cover it.

I can’t say for sure, but I really think I spent all night and day dealing with insulin that had lost its mojo, its libido, its life force, its essence, its right stuff. What the French call a certain… I don’t know what.

Once I got home, I cracked open a cold one (a new vial of insulin, that is), refilled my pump, and my BG’s since then have been rock solid and right where they are supposed to be.

Moral of the story: Beware of skunky insulin. And never trust a sweet potato.

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