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Friday, April 18, 2014

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.


Wednesday, April 9, 2014

The Obscure Train of Thought of a Slightly Panicked Diabetic

"Hello?"

My voice sounded strange as I answered my phone. It was 10 pm. I realized that I had not spoken out loud since leaving work 5 hours earlier. Since moving into my own apartment, I've been getting used to living alone. The solitude, the freedom, and the silence. Without any immediate person or animal to talk to, I realized that I could now go hours without hearing my own voice. It's still a strange concept.

But the lack of chatter is just one aspect of living on your own. And while I admit that there are moments when I miss human interaction, I know that this is a time of immense learning and growing for me. Every problem, big or small, becomes my responsibility. Whether that means calling a friend or parent for advice, calling a repair person, or problem solving a solution myself, it's up to me to fix my own issues.

But fixing a leaking sink or figuring out how to set up my cable are not quite the same as problem solving health obstacles on your own. And while obviously I have concerns about my diabetes, these instances are not always related to that. But I have also found that when I do have these moments of "panic", my mind goes straight to the most obscure details. Allow me to demonstrate:

I was sitting in front of the TV eating nachos. Immersed in the TV show I was watching, I took a collection of gooey chips from the bowl without looking down and put it in my mouth, swallowing with minimal chewing. But rather than going down smoothly, I could feel the lump get stuck in my throat. I wasn't choking, I could still breathe, but the lump had become rather painful. I coughed, hoping that it would  help the food move down my throat, but it only made it hurt more. I took a sip of water. No luck. Now I was starting to get worried. I'm not really sure what the normal thought process would be, but I started thinking about what I would do if the food remained lodged in my throat. I thought about who I would call. Should I go next door and see if someone is home? Since recently moving, I've only met one of my neighbors one time. But realistically what would she do? And what would I say? Should I call my parents? "Hi dad, so I'm not reallllly choking, but there's this lump of nacho painfully lodged in my throat. Suggestions?" Which piece of furniture would be best to throw myself over if I needed to do the Heimlich maneuver on myself? Would that even work? Wouldn't that be funny marketing if a furniture advertised, "Great for if you ever find yourself choking and alone in your apartment!"  I sat there considering my options when the food finally dislodged and the pain disappeared. Phew, crisis averted.

A few nights earlier, I had another obscure train of thought while contemplating my predicament. My blood sugar had somehow skyrocketed, I mean wayyyy out into space. It was the middle of the night and I felt soooo sick. My stomach was killing me, I kept switching from being hot to cold and back again, I was thirsty, and just overall in pain. I had given insulin hours before, but my blood sugar had only continued to climb. I decided to give a shot in addition to the insulin that my pump may have delivered. Watching my blood sugar continue to climb as I laid in excruciating pain, I started thinking what I would do if I couldn't get it to come back down. My first thought though was if the emergency room has valet parking. What do I do with my car? If I drive myself to the hospital, do I go park in the structure then walk to the emergency room? Having only ever gone with my parents, these logistical details seemed extra important in the moment. Then do I email my work that night or wait until the morning to tell them that I may not be in? What the heck, why am I thinking about parking and emails right now?! I continued to lay there for another hour before I saw the encouraging downward arrows on my CGM. I finally drifted back to sleep and awoke to a beautiful line of blood sugars hovering around 100.

The mind truly works in random, mysterious, and clearly entertaining ways. I'm just glad that I didn't have to act on any of my obscure thoughts!


Monday, March 31, 2014

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..."

Saturday, March 22, 2014

Superpowers and Kryptonite

I tend to not remember a ton from the time when I was diagnosed, but I clearly remember one conversation with a doctor that I had when I was 12 and probably type 1 diabetic for only a couple weeks.  I remember the doctor telling me that I would get to know my body so well, better than most people without diabetes, and know roughly my blood sugar just by the way I feel. It was such a foreign concept to me at the time. At that age, I wasn't paying attention to my body for the most part, maybe the way it looked since I was at the beginning of puberty, but not how I was feeling. I was skeptical, but I found the concept intriguing. "It's kind of like I have a superpower!" I thought. "I'll be able to feel my blood sugar. You ordinary humans can't do that!"

The doctor was absolutely right. As with many health conditions, you become hyper attuned and aware of changes within your body. Sure, I can feel a low blood sugar, but more specifically I can often feel the difference between a 90, 70, and a 50. Between 120 and 220 and even 320. I can feel the low coming sometimes even before it's reflected in the number on my meter. With my CGM, these feelings are often confirmed by the device, but the discrepancies between how I feel and what the CGM says are often in agreement with how my body feels.

DC Comics, The Adventures of Superman
I've been without my CGM, Gigi, for close to a month now. It wasn't a purposeful decision, but when my transmitter battery died, it's been taking longer than expected to get a new one sent. So I've gone back to using my superpower more, for better or worse. But during these past few weeks, I've learned that my power is not perfect and indestructible. Rather, my superpower has a kryptonite. These dangerous forces weaken my power, they confuse me, and they ultimately make me unable to accurately predict what my blood sugars are. Perhaps T1Ds have different forms of kryptonite, different interfering forces, but below are the 5 that I have had to battle against:

1. Adrenaline. I remember before my big interviews or doing something crazy like going bungy jumping or even before a first date, constantly testing my blood sugar because the adrenaline rush that I felt mimicked the feelings of a low. I'm shaking, my heart is racing, am I excited or am I low?!

2. Anxiety. Similar to the rush of adrenaline, my feelings of anxiety often get mistaken for a low. Context is obviously important, but in the middle of the night when I can't sleep and feel shaky and unsettled, there are times when it's been nerves rather than a low.

3. Alcohol. I was warned about this one even years before I could legally drink. "Alcohol is dangerous," my doctors would says, "You can't always feel your lows when you drink." While this hasn't been too much of an issue for me, I do notice that I don't feel my lows until they are much lower, so in the 50s as opposed to catching them in the 70s.

4. Other medications. I hate using my asthma inhaler even when I need it. After using it, I always get this shaky feeling and my heart races. But usually the desire to breathe normally wins out over potentially feeling low.

5. Nitrous oxide (laughing gas). When I got my wisdom teeth pulled out, my dentist turned on the gas and in less than a minute, I was telling him to turn it off. The feeling reminded me so much of being low that instead of the serene feeling that others get, it made me feel anxious, uneasy, and just uncomfortable.

Unfortunately, a few of my kryptonites are unavoidable and thus my superpowers are always in jeopardy. But part of being so vigilant and aware is also knowing when these weakening forces may be at work, and then taking extra precautions. This may mean more finger tests or checking my CGM more often. But in the end, I may not have the world to protect with my power, but I will do what it takes to protect the one life that is mine for the saving.

Friday, February 28, 2014

The Ticking Time Bomb

I held in my hand a ticking time bomb.

One of my worst fears was unfolding right before my eyes. But I was too late. The wheels were set in motion, I couldn't reverse it, take it back, start over. I would have to let it play out and hope that I was wrong. 

This had never happened before. At least not to this scale. My heart rate started to quicken and I began to prepare myself for the worst.

I held in my hand my insulin pump. 

I had just finished an incredibly heavy italian meal including sangria, bread, appetizers, pasta, the entree, and dessert. I started the meal with a high blood sugar and counting the carbs in this meal, I knew it would be a lot. I had given the insulin. It was already in my body, there was no taking it back. I was uncomfortably stuffed, so full that the thought of eating more made me feel sick.

My CGM buzzed, but instead of telling me that I was high like I expected it to say, it was telling me that I was quickly dropping. I looked at the number, 190 and dropping fast. I pulled out my pump, there was an alarming amount of active insulin in my body, wayyy more insulin than I would need. I knew I was going to crash. It was only a matter of time.

Tick. Tick. Tick.

I pulled out a pack of fruit snacks, and although it physically pained me to eat more, I swallowed them down. I was determined to catch this low before it got bad. An hour later I was still dropping, but it seemed to be leveling off and I started to think that maybe the low wouldn't be as bad as I thought. I was right around 70 and so I took another pack of fruit snacks.

Tick. Tick. Tick.

At 11 pm,  it hit me. In the span of 10 minutes, that 70 turned into 42 and then that 42 turned into 28. 

KABOOM!

 I was falling, crashing. I stumbled out of my room, downstairs and grabbed a small gatorade and another couple packs of fruit snacks. At this point the low had hit me full force, I couldn't think straight, walk straight, or make much sense of anything around me. I'm moving out of my parents house in a week, but today I was glad that my dad was just a few doors down. I knew that I was in danger of passing out and just wanted someone to make sure I was okay. I knocked on the door. "My blood sugar is 28" I slurred, falling into bed. After confirming that I had already treated the low, my dad continued to ask me questions, making sure that I stayed conscious. The words felt heavy in my mouth, my sentences barely reflecting the thoughts in my head. I could hear myself slurring my speech. Eventually my sentences and speech became more coherent as I became more aware of my surroundings. I tested my blood sugar again, 67. 

I knew the worst was over and I made my way back to my own room, drenched in sweat from the low. My stomach hurt from all the sugar I had just consumed on top of my heavy dinner. And while I was sure I would probably be facing a high blood sugar in a few hours, I was relieved that the worst was over.

The low has come and gone, but was has managed to stick with me is that feeling of both impending danger, but also of the unknown. I've never experienced such a helpless awareness. It was like being in a runaway cart rolling down a hill, knowing that you would crash at the bottom, and not being able to stop it. And yes, sugar could and did slow it down, but I didn't know how much would be enough to stop the crash, but not send me soaring in the other direction.

My insulin pump is my lifeline, but that night it truly felt like a ticking time bomb.


Friday, February 21, 2014

Energy Burnout

A couple weeks ago, I attended a 2 day course all about energy management. Energy management is a term that I had heard thrown around occasionally, but I wasn't entirely sure what it meant besides well, managing your energy. Basically the idea is that energy is our most critical resource we have as human beings, but most of us fail to manage it effectively. Think about it, we manage our time, but few of us think about how we can skillfully invest our energy each day. Many of us find our productivity slipping at 3 pm, or we come home from work or school exhausted or irritable, or perhaps we are too drained to do the things we need to do when we finally have the time. These are all examples of ineffective energy management. Ask yourself, are the people who matter most to you in your life getting your best energy?

When you manage your energy, you find that you are able to fully engage, that you are giving your full and best energy right here, right now. The course talked about 4 distinct, but connected dimensions of energy: physical, emotional, mental and spiritual. I learned techniques for managing and expanding the energy that I have. This includes both moving and eating for energy. While the premise of the eating for energy, eating light and often, makes sense for people without diabetes, I had some issues with this component. The moving for energy meant that at least every 2 hours, you get out of your chair and stretch and move your body. This could be going for a short walk or even doing small stretches at your desk. Finally, we spent some time in the course on self-awareness, coming up with our "missions" in life. This mission is an overarching statement of purpose that can help you make decisions and navigate through your life. It's the greatest driver of engagement and helps you decide how to best invest your energy.

After the course, I started thinking about where in my own life I have the biggest problems with energy management. Yes there are times when I could be more engaged at work, or with family and friends, but the blaring and obvious answer is in my diabetes management. And I don't think I'm alone in this. We even have a term for when we run out of energy taking care of our diabetes, diabetes burnout. Managing a chronic condition takes tremendous amount of energy in all 4 dimensions, but especially physical, emotional and mental. It requires constant vigilance and attention. You're always preparing and planning. Your body is continuously being subjected to glucose tests, insulin administration, and going through high and low blood sugars. You worry, you get frustrated, you get annoyed, and sometimes you just burn out.

But burn out with a chronic condition is dangerous! We aren't talking about being too tired to get a work out in one day or not being as productive in the afternoon or as engaged with your partner. No, energy management with a chronic disease is vital! When someone isn't managing their energy effectively, it effects how they take care of their disease which can have immediate, dangerous, and damaging consequences. I know that when I've gone through phases of burn out, I am less careful about carb counting and low and high blood sugars can become more frequent and extreme. This can lead to both short and long term consequences for my health.

So what are the strategies that someone can use so that the amount of energy that is necessary to care for a chronic disease does not lead to burn out? I don't know. I have some thoughts, but it's something I still struggle with myself. But the thing that I think may be most helpful is having your life "mission". I know, you're probably thinking how some statement is going to help with your health. But for me, poking my finger to check my glucose level is not about the number. It's not even about my A1c. For me, it's about being healthy so that I can get married, travel the world, have a family, be there to watch my children grow up and have the joy of becoming a grandparent. I want to live a long, healthy and fulfilling life. That's my mission, that's what drives me to do the little things each day: making sure I have enough test strips, counting my carbs, testing my blood sugar, remembering my fruit snacks, bolusing on time. That's what I remind myself when I start to lose energy, when I see my self-care slipping. Maybe this will help you, maybe it won't. But when it comes to your life, why do you want to take care of your diabetes? What is your mission?  Who/what matters most to you? What makes your life really worth living?

Energy is our most critical resource as human beings. How are you managing yours?







Friday, February 14, 2014

My Dearest Diabetes

My dearest Diabetes,

On this Valentine's Day, I'd like to take a moment and express my true and honest feelings towards you. After all, as the men I have dated have come in and out of my life, you have stuck to, er I mean by, my side. You have been with me through the highs and the lows, never mind that you caused many of them. But you've never abandoned me, you're always here, even despite my best effort to get rid of you. I have to admire that kind of persistence.

Our relationship is unconventional. You were an unwelcomed force in my life, bringing with you many changes, disruptions, and emotions. Dare I say, I hated you when we first met. But you made it clear that you weren't going anywhere so I learned to make the best of our relationship. I want you to know that you can be a real pain. Sometimes I wonder why you're such a prick. But other times you can be so sweet, so it's hard to stay mad at you for long.

You're needy, demanding, and all consuming. I think about you all day, every day. Sometimes you're even in my dreams. It's hard to remember my life before you, and to think of it without you, should that day ever come. I complain about you all the time. To my friends, family, strangers. Some understand completely, others try to, and some will never know what it's like to have you in their life. You bleed me dry.

But you've changed me. I would not be who I am today, where I am today, without you. While you've taken so much from me, my time, my energy, my fears, my health, you've also given me so much in return. You've given me determination, a strong sense of responsibility, strength, a community, and purpose. I hate you, I wish you never found me, but I cannot deny that deep down, you've made me a better person.

Happy Valentine's Day, Diabetes. I hope it is a sweet one.

Love,
Me