Explanations

I’ve learned over the years that I’m someone that craves explanations. I want things to make sense, I want to know why something may have happened. I need logic.
Granted, I don’t always need to know exactly why something happened, sometimes we just don’t know, but I find myself still wanting to make an educated guess. And when there is a disconnect between what happens and a proposed explanation, I get frustrated. “That’s impossible! There’s no way that what you just said could have caused that.” Those close to me are all too familiar with my need for logical conclusions, and my irritated response when I’m not satisfied with the answer.
But I know we don’t always get answers. Why do bad things happen to good people? Life is random, mysterious, and unpredictable at times, it’s part of what makes it both devastating and exhilarating. In many cases I’m perfectly content with the explanation that sometimes things happen that there are no logical explanations for, it’s the universe at work.

My diabetes falls somewhere in the middle.

Too many times I’ve found myself frustrated with a high or low blood sugar, not understanding why it happened when it seemed that I did everything “right” to avoid it. I rack my brain trying to come up with a logical explanation, but sometimes there are just too many variables to consider. Was I really that far off in my carb counting? Is this a delayed effect from the exercise I did earlier? Is something wrong with the insulin? Is there a bend in the tubing? Is the insulin not being absorbed at the site? Am I getting sick? Am I stressed? So much to consider, I can’t always draw a one-to-one connection for a high or low.

Last week I was shocked to see a blood sugar that was over 500. A rare event, my first thought was why?? Well really it was “Oh f*ck” but then why did this happen?!? I ran through the list in my head as I tested my ketones, gave myself a shot, and changed my infusion set.

You don’t always get answers for everything in life. I’ve learned to accept it and move on with the information that is available.

But sometimes, when you’re lucky, you get exactly the explanation you need.

bent infusion set cannula blocking insulin from being delivered

2015 Diabetes Blog Week Day 4- Changes

Diabetes Blog Week

When I think about diabetes and what I’d like to see changed, one word comes to mind. Well maybe 2, a cure would be a nice change. But the word I’d like to focus on is integration.

Integration. I could yell it from the rooftops. Integration would make diabetes so much easier to manage. It would make communication so much more effective. It would make our lives in general a little less burdensome. 


What exactly am I talking about?

I want diabetes devices talking to other diabetes devices. I want my pump, my meter, and my CGM to all communicate constantly. And while I know this is unrealistic, I wish that this communication could happen across companies so that my dexcom CGM could talk to my Medtronic pump or a Bayer meter could talk to an animas pump. I want numbers and data flowing freely from one to the other, whether it’s then used in a calculation, helping to inform a decision, or just being stored for later retrieval.

I want diabetes devices talking to non diabetes devices. I want my CGM numbers and my pump talking with my phone, presenting my data (carbs, boluses, blood sugars) in an easy to read and accessible manner in an app. I want their data showing up on a graph on my computer or tablet. I want other apps that I’m using to integrate in a platform with my diabetes data, whether it’s food tracking that I do or exercise tracking. How great would it be for one app that would have my carb and bolus information from my pump, graphed against my blood sugars that are collecting from my meter and CGM, informed by my Fitbit tracker active minutes and steps, and integrated with the food that I tracked during the day in My Fitness Pal?! Think about how much easier it would be to see a trends and potential causes for highs and lows. Based on the food you ate here, it looks like you gave too much insulin and that’s why you dropped low here.

I want ALL of these devices talking to my doctor. I want to be able to walk into my endocrinologist’s office or even my primary care physician, or eye doctor, or really any doctor’s office and have all of this information available to them. I want the information from all of my devices to be consolidated into a format that is integrated right into my medical record. Then when I go to the endo, they aren’t making suggestions based off of just my CGM, they are looking at the complete picture with little burden to me since all of this uploading, syncing, and integration happens automatically. 


I’m hopeful that these changes are coming soon, that this is the future of diabetes self-care. Integration will be a requirement, not just a nice feature. 


This post is part of the 2015 Diabetes Blog Week. Today’s topic: 
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you? You can read more posts on this topic here

I’m a cord tucker

Ninety-five percent of the pants I own have pockets. When I wear a skirt, my pump is clipped somewhere that is not visible. My pump stays in my pocket, secure and hidden away.

In many ways, diabetes is an invisible disease, or visible only when you want it to be. I don’t think you could look at me and be like, “Oh yea, she has type 1 diabetes.” You might see me checking my blood glucose number, or take my pump out of my pocket to bolus for my lunch, maybe you see that I’m looking a little off from a low, but otherwise I don’t think I look any different than you do.

I’m a cord tucker.

But do you have a cord constantly hanging below the hem of your shirt? A cord through which life sustaining insulin travels. I have a cord. And in some ways that cord is symbolic of the difference between me and you. That cord is a visual reminder of a disease that I live with and manage every single day. But other times that cord is a sign of solidarity. Like when in a random bakery in Detroit, I saw your cord and knew right away that we had something powerful in common. That cord ties us together.

I’m a cord tucker.

Sometimes it’s a safety issue. I don’t want the cord to get wrapped around a knob or something and yank my infusion set out. So I tuck it into my pants so that it doesn’t hang freely. But sometimes it’s not about safety. It’s about not having to talk about my diabetes or answer questions when I don’t feel like it. It’s about remaining invisible when I want to be.

Yesterday, I hung freely.

I let my cord show. Yesterday it didn’t matter to me. I didn’t care who saw it. But you stopped me in the office kitchen, “I don’t mean to touch you, but there’s something hanging off your shirt,” you said as you reached towards my cord, ready to break it off like a loose, dangling thread. I didn’t care if it showed or not. But you did when you told me that my “stuff was all over the place,” gesturing to my cord hanging on my chair. You weren’t being mean, or judgy. You were trying to be helpful and maybe even concerned. You weren’t used to seeing a cord, and now you did. But do you really care if my cord is showing? Do I care? Maybe. Maybe not.

Today, I’m a cord tucker.

Double check

It was a typical morning as I got ready to head to work. I ran through the checklist for the day:

Gym bag. Do I have my change of clothes? Shoes, socks? Water bottle.
Lunch box. Do I have my breakfast, lunch food, and snacks? Silverware?
Do I have my glucose monitor? Enough strips? Do I have my CGM? Is it charged? Do I need the cord?
Do I have extra supplies? Insulin, infusion set, inserter, reservoir, extra syringes?
Do I have enough fruit snacks if I go low? Maybe grab a couple more.
Phone. And charger.
I need my work badge.
Do I have my hat? And my gloves. Where’s the other glove?
Wallet.
Car keys. And apartment keys.

I think I’m ready.

Let’s go.

Twenty minutes later I walk into work, ready to take on the day. I reached into my pocket. Empty. The other? Empty as well.

Insulin pump?? Where’s my pump? Shit.

Back home I go. I’m so forgetful sometimes.

The Big Bang Theory Bust

I love the show, The Big Bang Theory- it’s one of my favorite. In fact, last year I even dressed as Amy Farrah Fowler for Halloween. But, for the first time ever I cringed while watching a recent episode. Penny was sitting in an interview to be a pharmaceutical rep. While talking about her previous job experience as a server at the Cheesecake Factory, she says that she once convinced a group of bigger customers to order cheesecake, ones that even had an insulin pump. Then the interviewer says to her, “I have an insulin pump.”

In my experience, it’s very rare that a television show accurately depicts diabetes, Type 1 or Type 2. Maybe the statement was just a way to communicate that the customers had diabetes. But to me, Penny’s statement seemed to imply that if you have an insulin pump, your diabetes must be really bad. But that’s not the only assumption that one could make from that statement. Someone could assume that having an insulin pump means that you must not be doing a good job taking care of yourself, that you’re to blame for your present state, that an insulin pump is something you get when all else has failed.

I was watching the show with someone who knows that I have an insulin pump, but not a ton more. We haven’t had a lot of discussions about my diabetes yet and what it means to live with Type 1. We haven’t talked about my pump and what it does and what my life was like before I had it. Rather than taking the opportunity to educate, I instead cringed on the inside, hoping that my friend was not silently making assumptions about me and my diabetes based on that statement. In that moment, I hated that show for making me feel self-conscious or ashamed even for those few seconds.

Because I’m not ashamed. Having an insulin pump is nothing to be ashamed about. I love my pump. It has given me tremendous freedom, control, and flexibility that I didn’t have before.

My insulin pump is the tool that helps me keep my blood sugar under tighter control. I didn’t go on it because my control was poor, I went on it so that I could have even better control. My pump is what helps me take care of myself and be healthy, not a symbol of the opposite.

Maybe not everyone interpreted Penny’s statement the way I did, Maybe I was extra sensitive to it. But, in my opinion, The Big Bang Theory has it wrong, Penny has it wrong. I am not ashamed.

Diabetes Blog Week- Day 6: The Diabetes Lens




“Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

In many ways, diabetes has become a lens through which I see everything in life. Thus every picture becomes a diabetes-related picture. So for this post, I chose 4 pictures that at first glance don’t seem “d-related,” but as you’ll see, my diabetes is there in all of them.
Voted Best Tacos in My City
The newspaper of city where I live decided to have a poll to see what the best tacos in the city are. These are from the restaurant that won first place. Having never been before, my friends decided that we had to try them. I have to say, I definitely agree. But looking at this plate, I see more than the delicious food, I see a complicated equation of trying to figure out how many carbohydrates exactly I’m eating here and how much insulin I need to give.
Spring Is In The Air
On this particular day, my coworker and I decided to take a walk after lunch around the city. Since we’ve been having unusually cold weather lately, we were excited to see that the flowers were now in bloom and stopped to take a picture. My coworker walked out of the office for our walk carrying nothing besides her phone. I on the other hand knew that I had to be prepared while away from the office. As I pulled my phone out to take this picture, I reached into a bag that also had 2 packets of fruit snacks, my glucose meter, and a little money just in case. The thing is, I can never walk out of the office empty handed because I never know when I might drop low.
The New Dress
Wedding season is upon us and I’ve been shopping for some new dresses to wear. With any dress, I look to make sure that I like the style, the cut, the fit, the color, and the material. As I try on each dress I ask myself, will it match the occasion? Is it flattering? Will I get good use out of it? These are the normal considerations. But with every dress or outfit that I try on, I also have to consider my diabetes and specifically, where my pump will go. Does it have pockets? Will my pump show if I strap it around my leg or wear it on my hip? How easily will I be able to access it? My diabetes can influence what I end up buying and wearing.
The Bike Ride
 
Within the last year, I’ve gotten pretty into bike riding. My mom and I would go for beautiful, long rides in the summer together. I love the exercise, the scenery, and this quality time that we spend together. I look at this picture and I see the beautiful lake, my awesome jersey with the Detroit cityscape, and my bike. But what you don’t see are the 2 packs of fruit snacks and granola bar stashed in the pockets on the back of my jersey. You don’t see my CGM and more emergency sugar in the red pack attached to my bike along with my phone, ID, and insurance card in case of a real emergency. Having diabetes means always having to be prepared, especially when you’re out exercising.

The Forgotten Pancreas

How could I have been so stupid?! So careless. So irresponsible. So forgetful?

I was cursing myself for a mistake that I had made. One that I have only made about 4 other times in the past 13 years. I was in a rush to get to a friend’s BBQ, I couldn’t be late because I had the hamburger meat with me. I scurried around my apartment collecting everything that I would need, including my belongings for the weekend since I wasn’t planning to come back to my apartment for a couple days. Meat? Check. Pasta salad? Check. Duffle bag? Check. Keys? Check.

I got into my car, driving the hour to my friend’s house, getting there just in time for him to put the hotdogs and burgers on the grill. My friends began to arrive, bringing an assortment of delicious foods. I filled my plate and got ready to bolus. I reached into my pocket only to realize that my pump wasn’t there.

Where is it?! I ran out to my car, ruffling through my duffle bag hoping that it had fallen in or was in the pocket of the pants I was wearing earlier. No luck. I checked the floor of my car and all around, but it was nowhere to be found. I must have left it on my bed, forgetting to reconnect it after getting dressed.

I went back inside distraught. It was only 8 pm, I had the whole night ahead of me. It would be a 2 hour drive to go back and get it and drive back. Would it be worth it? If I went back to my house, I probably wouldn’t want to come back. There goes my whole night, a night that I was looking forward to for weeks.

“I have to go home.” I said, feeling defeated.

“What? Why??”

I explained that I didn’t have my pump, and I needed it.

“But you have Gigi right?”

I explained that I could test my blood sugar, but that I didn’t have a way to give insulin. My friend that’s a doctor chimed in, do you have insulin, what about injections?

Of course! I could give shots. I had a vile of insulin and a couple syringes just in case. While the thought of giving multiple injections over the course of the night was not ideal, it would at least get me through the night. I gave a shot for the food and a correction for my high blood sugar and waited. I watched as my blood sugar continued to climb.

My anxiety rose with my blood sugar. What if the shots didn’t work? I was starting to feel sick and told myself that if it didn’t start coming down soon, that I was going to leave and drive home. But sure enough, the arrows started pointing downward and my blood sugar began to drop. I made it through the rest of the night with injections and opted to drive home at 1 am knowing that I’d have my pump through the night.

I know we all make mistakes. We’re all forgetful from time to time. But essentially leaving your pancreas on your bed is a mistake that I hope I don’t make again any time soon.

Integration

“What is it?”

The devices gathered around, peering inquisitively at the band that lay in the middle of the circle.

“I don’t know,” B.G. Meter replied, inching closer.

“Don’t touch it! We don’t know what it does! It might be dangerous!”

Meter gently tapped on the black surface and a series of bright white circles bounced across a mini screen.

“Look it lights up!” Gigi exclaimed.

“Why hello there,” the band stretched out, springing to life. My name is Fitbit Flex. And who are all of you?”

“Oh um, hi. My name is B.G. Meter and these are my friends Insul N. Pump and Gigi CGM. We didn’t mean to bother you, but we noticed that the Human started wearing you and we were curious what you were doing.”

“Oh how lovely! It’s always a pleasure to meet new devices. I’m a tracker. When the Human puts me on her wrist I can tell her how many steps she takes each day, how many calories she’s burned and even how well she slept!”

“Oh wow. You must take a lot of blood to figure out all that information. Where is your lancet hidden? Not that I was checking you out or anything, but you have a rather sleek design.”

“You’re making me blush, Meter. I actually don’t need to take any blood to figure out those numbers.”

“Whattt!? No blood? But you’re still under the Human’s skin right, like Gigi or Insul?”

“Nope. I prefer to stay away from bodily fluids and functions.”

“Crazy! How come you can’t do that, Gigi? So how does the Human know how many steps she’s taken? I noticed you don’t have a very big screen.”

“Yes, bigger is not always better, Insul. When the human lightly taps on me, my dots show what percentage of her goal she has completed. One dot is 20%, two is 40%, etc. But more importantly, if the Human takes out her phone and opens my app, she can see all these numbers and graphs right on her phone.”

“Wait, let me get this straight. You send your information right to the Phone, the thing that the Human always has with her?! And she doesn’t have to type anything in? We’ve been trying to get our numbers on the Phone for ages, but it will never take it from us!”

“Well that seems rather silly to me. The app also lets the Human keep track of other things too like her weight, calories eaten, and how much water she drinks. She can even cheer on or taunt her friends to reach their goals.”

“How can we get our numbers on there?? I know that the Human can manually type in that kind of information, but she’s kind of lazy. It would be perfect if her blood sugars and units of insulin delivered was wireless sent and synced right in your app. With your information about steps and activity and food logging and our information about glucose numbers and insulin, we could really help the Human understand the big picture!”

“You know what, Gigi, that’s a great idea. Hopefully someone smart is working on figuring that out right now.”

I sure hope so.

It’s Not A Pager

“Is that a pager?”

I had pulled my pump out of my pocket to what I thought was discreetly bolus for my dinner. I was at a large dinner seated with friends, strangers, and acquaintances. That question has always been a great opener to a usually educational conversation about type 1 diabetes, a conversation that I never minded having and actually often looked forward to. But this time I didn’t even look up from my pump as I worked out the carbs and calculations in my head.

“No, it’s an insulin pump,” I replied, not even bothering to lift my head.

That’s all I said. Not, “No it’s actually an insulin pump, I have type 1 diabetes and I give insulin this way instead of shots.” Not, “Hah no, its an insulin pump, I have type 1 diabetes and I have to give insulin when I eat.” No explanation, no education, no discussion.

“Oh sorry, it kind of looks like one.”

“Don’t worry, she gets asked that a lot.” My friend seated next to me took the opportunity to chime in.

I should have said that to him, I should have made sure that he didn’t feel awkward, that he knew that I didn’t feel awkward by his question, but I didn’t. I finished entering my bolus and put my pump back in my pocket. And that was the end of it.

It was not my typical response when someone inquired about my diabetes. I wasn’t trying to be rude, I wasn’t offended, or embarrassed. I’ve thought about my response, or lack there of, for the past few days. Why was this time different? Why this time did I find myself to be slightly…well, annoyed?

It’s happened many times where I’ve known a person for years before they find out that I have diabetes. That’s because most of the time, you can’t necessarily tell. I keep my cords tucked away, my pump in my pocket, my infusion sets covered by my clothing. But other times, I don’t care who sees. I test my blood sugar at my desk or on my lap at the table. I wear my pump clipped to my side, my tubing dangling below the edge of my shirt. And when questions are asked, I explain. I teach, I answer questions, I demonstrate and I educate. I usually like doing it, I like talking and sharing my experiences and life with diabetes.

But not that night. I didn’t want to talk about my diabetes. I didn’t want to explain what it was and what I was doing. I didn’t want the next 20 minutes to be about me or about diabetes or about anything related to it. I didn’t want my diabetes to be at that dinner, at that table.

For the past month, I haven’t worn my CGM. And while I still tested my blood sugar, it was less frequent. It was a month of not constantly being summoned by buzzing and beeps. It was a month of a sort of denial of my blood sugars. Without my CGM to tell me otherwise, I had a tendency to trick myself into believing that they were in range when mostly likely they weren’t. It was a month of drastically less lows, but probably more highs. But it was a quiet month, a necessary month. A month where everything wasn’t about my diabetes. Where my focus and energy, for better or worse, was spent elsewhere.

So when I was asked if my pump was a pager that night, I didn’t want a diabetic discussion and my response reflected that.

Today, after a month, I took my CGM back out of the drawer and started wearing it again. Today I stopped pretending like diabetes isn’t a part of my life and can be ignored, even for a month. I know I don’t always have to talk about my diabetes, that I can decide when I want to keep it to myself and when I want to share it. But whether it’s today, or tomorrow, or the day after, not talking about my diabetes does not mean that it isn’t there and that it will go away.

“It’s not a pager, but I get asked that a lot. I have type 1 diabetes and this is an insulin pump, I can tell you more about it if you’re interested…”

A Melody of Hope

I know my beeps. I know my beeps similar to the way a parent can recognize the cry of their baby. I know the sounds that my insulin pump and meters make. I don’t get them confused with other alarms, dings, and noises of everyday life. And since I’m usually not surrounded by other pump wearing diabetics, I know that the beeps are for me. That is until I go to a diabetes event. What a strange phenomenon it is to be surrounded by dozens of other diabetics. My beeps become lost in a sea of similar noises, mixing with the sounds of countless other pumps and meters. My unique identifier becomes a unifying force, a sound signifying a shared experience.

My contribution to this year’s mosaic mural

The past two weekends I’ve had the pleasure of attending 2 different JDRF walks, one in Chicago and one in Ann Arbor/Dexter. In Chicago, I was volunteering with an amazing organization called Project S.N.A.P, collecting artworks drawn at the walk by T1Ds, their families, and their friends to become part of a giant mosaic mural. You can read more about my experiences with Project S.N.A.P in this post, or on their website. The second walk I attended as a representative of the Young Leaders Committee of my local JDRF chapter. It was the second JDRF walk that I’ve ever attended as a walker.

I attended my local diabetes walk with my mom. The walk was in a beautiful Metropark, the path winding through trees with changing colored leaves. Although it was raining, it was still a beautiful and enjoyable walk. At one point my mom turned to me and asked if I was sad/upset that we didn’t really do these walks when I was growing up. I wasn’t mad. Mostly because I knew that my family always supported me. The walk that day was a perfect example. Knowing that I wanted to go to the event, my mom skipped her normal Sunday plans to wake up early and drive 45 minutes to walk in the rain with me.

But even though I am not upset, I know that I did miss out on some amazing experiences. When I looked around at the walks, I saw teams sometimes with 10-30 people all there for one special type 1 diabetic. They were there showing their support by physically coming together, by putting on their team t-shirt with their creative names and bright colors, and spending the morning dedicated to that one child with diabetes. I can only imagine how special that child must feel. Yes, they were being singled out because of their diabetes, but in a positive way. For at least one day each year, that child isn’t alone in their experiences. They aren’t the only child with diabetes. They are able to come together and see other children just like them, to meet and talk with them.

My parents had their own reasons for not pushing to go each year, but I know that if I had expressed an interest to attend these walks when I was younger, that we would have gone. Perhaps I didn’t know at the time what I was missing out on. I was content with the support from my friends and family and with the few other diabetics that I knew.  But these past two weekends while I stood in a sea of other diabetics, I heard those beeps, my beeps. And while it was confusing and odd to hear them, each beep seemed to say “You. are. not. alone. beep. We. are. in. this. together. beep.”

It was the melody of hope, of support, and of all the efforts to find a cure.