You put the “um” in “numbers”

“What do the numbers say?”

Numbers are often seen as this objective piece of data. And because they are objective, they cannot lie, right? We might not always like what they tell us, and they don’t always tell the complete story, but they’re often hard to argue with. How’s my blog doing? Well let me check the analytics and number of viewers. How’s my health doing? Well let me check my blood work: my blood pressure, my cholesterol numbers, my A1c. Success criteria is often operationalized in numbers. Who won the race? Let’s check the times. Who won the game? Let’s check the score.

You learn to trust the numbers. And while you can interpret the numbers differently, put them into context, explain the variance or trends with outside information and external variables, the numbers are what they are.

You start to crave the numbers. If some numbers are good, more must be better. I recently switched to a smart scale. I wasn’t just content with knowing my weight, I wanted to know my body fat percentage and my muscle mass percentage too. More numbers could help elucidate what’s really going on in my body and alleviate any uncertainty. If I’m working out more, but I’m gaining weight, I would feel much better knowing the weight was coming from more muscle mass and not body fat.

You rely on the numbers. They show your progress. They show your weaknesses and your strengths. The numbers are your guideposts.

So imagine how you’d feel if those numbers fail you. When all of the sudden, they can’t be trusted. And instead of helping you, they lead you astray.

Lost? Frustrated? Angry? Disappointed?

That’s how I felt as I returned home from my 3 month endo appointment this week. In the past 3 months I’ve had one major change, I switched insulin pumps and continuous glucose monitors. I was having so many issues with the sensor leading up to the appointment. It would suddenly stop working after only 1 to 2 days, it was inaccurate compared to my finger tests, the trending arrows were completely misleading. I told my doctor these problems, but I was still optimistic. After all, I had started eating healthier, been more consistent with my metformin to help with blood sugar spikes, I didn’t feel like my A1c should have been much different from 3 months earlier. But I was wrong. Those inaccurate numbers had contributed to my A1c going up .6 of a point. This may not seem like much, but when you are trying to get below a certain number and are at the lower end, to suddenly be back at the higher end is very discouraging.

numbersAll day I alternated between being livid and just feeling sad. I felt let down by the numbers I rely on every minute of the day to be healthy. By the end of the day, I made the decision to switch back to my old, reliable sensor. Enough is enough. My health shouldn’t be made worse by the devices that are meant to improve it.

Numbers are complicated. So is having diabetes. And that means being critical of the numbers, always. Because what is meant to be helping you could actually be making things worse if you aren’t careful.

 

 

 

The CGM Courtship

For the most part my continuous glucose monitor, Gigi, and I are inseparable. We’re attached at the hip, well technically more like the lower abdomen. Over the years, I’ve noticed that Gigi and my relationship has fallen into a pattern. As far as relationships go, it may not be the most functional relationship, but it is consistent. And by being predictable, I’ve learned how to make it work for both of us.

Mine and Gigi’s relationship cycles about every 2 weeks. And while the overall nature of the relationship may be the same, each encounter is slightly different.

Day 1: We meet. Again.

3a318-photo11Sometimes it’s been a while since we’ve  last seen each other, other times only a couple of hours. This first encounter has gone many different ways. Sometimes it’s smooth and painless. We connect effortlessly. Other times, it’s awkward and hurtful. On a few occasions, we have to start completely over, the discomfort and inadequate connection too much to bear. But eventually we make it through this initial introduction.

Day 2-4: The courtship.

These first few days together I’m optimistic, yet cautious. I can tell Gigi is trying to give me what I need, but she can’t completely be trusted yet. Our connection still new, we’re still out of sync. These days are spent aligning our desires. When Gigi tells me something, I often have to verify with another source. But these calibrations make us stronger together.

Day 5-11: The sweet spot.78db7-photo39

With time, we hit a groove. We’re in sync. We become completely trusting of each other. We are one. When Gigi tells me I’m low or high, I believe it. Gigi’s screen reflecting what I feel, the beeps and vibrates warning me of danger. I can count on Gigi to be there for me, to be fully present and connected.

Day 12-14: The beginning of the end.

Like any relationship, aspects of Gigi start to become annoyances. Gigi becomes a physical itch that can never quite be scratched, never feeling gratified in my efforts to find the comfort I once had. The beauty of our connection begins to fade, the tape that once held us together, no longer sticking. My distrust of Gigi starts to return. Sometimes Gigi just disappears for no reason, replaced by a signal reminding me that our connection is breaking and out of range. Other times, we don’t seem to be communicating at all, Gigi completely mystified and communicates only with ???. And the lies! Gigi tells me I’m low- 55, but I feel fine. When I check my other source it says I’m 155, how can this be?! But it’s not all bad. There are stretches when Gigi is perfectly normal, and its for this reason that I can’t bring myself to end things quite yet.

Day 15ish: The break up.

Finally, it all becomes too much. The distrust, the lies, the disappearing. Gigi can no longer be counted on to display the truth and be depended on when I need it. The physical discomfort grows. So I do it. I rip the tape off in one decisive yank and end things once and for all. The redness on my skin remains as the memory of the past 2 weeks fade. For a moment I savor the unattached freedom. But this feeling is fleeting, already I miss the valuable insights that Gigi gives me. I miss the comfort of always knowing where I stand, I miss the control that Gigi affords me. I miss Gigi.

And so it begins again.

Day 1: …

 

A day in the life

Some days I’m surprised I get anything done with how preoccupied I am thinking about my blood sugar.

BGchart

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

Mission: Secure Lost Meters

I sat in the car with that satiated, content feeling you get after a particularly satisfying meal. However, I was feeling extra thirsty, which was odd since the beer and multiple glasses of water should have been sufficient to quench my thirst. Tuning into my body, I realized it was the symptoms of a high blood sugar that I was experiencing.

I started digging around in my purse, looking for my CGM. I felt around in the endless abyss that is my work bag, but nothing was feeling familiar. My searching became more frantic. “Where is it?!” I thought. “It should be here!” Okay, well if I couldn’t find my CGM, I would at least test my finger so I could tell how high I was.

My hand went back into my bag, but again came up empty. Gigi AND my glucose monitor, both gone?! How could this be?? I started to panic slightly. I felt lost. Rarely am I without both my meters, no way to tell exactly how high I am and how much insulin to give. I could guess, but if I was way off, the consequences could be serious.

“I don’t know where my meters are, either of them. They should be here! I need them. What if I lost them?” Eyes wide, I dumped everything out of my purse, searching the surrounding area. But the search was futile.

“Relax,” said the voice of reason sitting next to me. “I’m sure they’re not lost. They probably fell out in your car.”

Yes. Yes, that would make sense. They’re probably in my car. But I don’t remember taking them out of my bag. But maybe they fell out without me noticing. I’m sure they’re there. Where else could they be?

“Yeah, you’re probably right.”

The 10 minute drive back to my car seemed to drag on forever. I tried to enjoy the music and the company, but my mind was focusing on only one thought: finding my meters.

We arrived back at my car. I wanted to run and fling the door open, but I kept my composure. Of course they’d be there, what was the rush?

I opened the passenger door and picked up the coat on the seat. They weren’t there, either of them. I looked on the floor, in the back seat, between the seats, nothing. Defeated, my mind pictured Gigi abandoned on the side of the road. Who would find her? How would she be returned to me? Was she gone forever??

“I’m going to go check my office. Maybe I left them there.”

It wouldn’t have been the first time that I would have left Gigi under a pile of papers, out of sight and out of mind. We loaded into my car and drove across town on a mission to return my meters home safely. We pulled up to my darkened office, it was 10:30 at night and the only light was from the cleaning people finishing up for the evening. I walked inside, making my way through the darkness to my office. I lifted the papers scattered across my desk. Gigi! My beautiful CGM! I was so relieved. But where was my other glucose meter? I looked in the drawers, on the floor, and all around. It wasn’t anywhere.

I returned to the car, perplexed. It’s happened before that I’ve forgotten my glucose meter at home on my nightstand, where it sits over night. And it’s happened before when I’ve left my CGM at the office. But both in the same day?? I suppose it was possible, I needed to believe it was.

At this point I was feeling mad. I was mad at myself for being so forgetful. I was mad that my diabetes was being so disruptive, and in this case, I was to blame. Rather than being able to relax and enjoy my evening, I instead spent it in an anxious, sour mood driving across town. I was feeling bad for the guy I was with who insisted on accompanying me and for inconveniencing him as well.

“I’m sorry, I know this isn’t how we imagined spending the rest of the evening. Thank you for coming with me.”

“You don’t need to apologize. We got to go on an adventure together. I know you’ll find the other meter too.”

I drove home, ran up the stairs, and went straight to my bedroom. Sitting on my nightstand where I left it was my other meter. Relieved, I alerted my mission comrade that it had been secured and that all was well (except for my blood sugar).

Looking back, I’m still upset that I managed to leave both meters separately in different places, but that’s not what I’m going to choose to focus on. Instead, it was the attitude of the person that I was with that has stuck with me.

There are lots of times when my diabetes has ruined or altered plans that I had. Maybe it was a low that made me stop what I was doing, maybe it was forgetting supplies and having to drive back and get them, maybe it was running around trying to find a battery because my pump had died, or maybe it was just having to make different arrangements to accommodate my schedule or needs. It can be annoying, frustrating, and upsetting. But as I was reminded, you can’t let it ruin your plans, or your mood. Every cloud has a silver lining, a forgotten meter is a chance to go on an impromptu adventure. I’m just glad this mission ends with a smile.

Diabetes Blog Week- Day 2



“This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.”

CGM, Go To Bed

An ode to my continuous glucose monitor


10:30 pm:

I put you on my nightstand, I lay you down to rest,
In case I don’t feel well, my blood sugar you will test.

My blood sugar is steady, not too high and not too low,
That ice cream after dinner, I hope you will not show.

An undisturbed night of sleep is what I really need,
A steady line on your graph in the morning, I truly hope to read.

Slumber is upon me, I’m drifting off to sleep,
I beg you CGM, a quiet night without a peep.

1 am: Buzz buzz buzz

Double arrows pointing up I awaken with a start to find,
Of all the arrows, up and down, you’re my least favorite kind.

Not much I can do, laying here with insulin on its way,
Groggily back to sleep I go, and hoping this time to stay.

2 am: Buzz buzz buzz

My eyes spring open, you caught me quite off guard,
My bg’s now over 180, you just had to make this hard.

My number is too high now, but I’m hoping not for long,
It may start to drop too fast, but hopefully I’m wrong.

4:30 am: Beeeeeep Beeeeep Beeeeeep

From my nightstand I hear your sound, which can only mean one thing,
“You’ve dropped below 55, wake up, wake up!” your beeps eagerly sing.

I take my fruit snacks and into my mouth I dump them all,
For the last time tonight, please back to sleep I hope I fall.

4:45 am: Buzz buzz buzz

Now you say I’m under 80, well at least I’m on the rise,
Maybe giving insulin for that high wasn’t all too wise.

Please CGM, let this be all, I’m really very sleepy,
If you wake me up one more time I may get a little weepy!

7:30 Ringgg Ringgg Ringgg

You’ve got to be kidding me, what is it now? You haven’t had enough?
With all the ups and downs this night, my sleep has been quite rough.

It’s my alarm! Time to get up; to work I must get ready and go.
Oh what’s that on the graph? A perfect number NOW you decide to show!

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.

Going to Extremes

Two nights ago I had one of the highest blood sugars that I can remember in years. I wrote a whole post about what potentially may have led up to it, where my self-management went wrong, and just how horrible the experience was. I was ready to publish the post today, but then last night I had one of the lowest blood sugars that I’ve had in years as well. I can only think of 2 other times in the past 13 years when it was this low. I went from 515 one night, to 22 the next (for those who aren’t familiar with blood sugar numbers, I strive for a blood sugar around 100-120).

Both numbers are scary. The 22 was much more of an immediate danger, but the 515 was disappointing, perplexing, and just overall awful. Both numbers are extreme. Both are dangerous in their own way and both have left me feeling out of sorts.

As I write this, my blood sugar is at a comfortable 125, clearly recovered from both incidences. I’m mad at myself, especially for the high number. I know that it’s my fault. I wasn’t as vigilant and careful as I should have been, and because of that, I faced the consequences. Looking back there are certain moments where I could have intervened earlier so that the results weren’t as catastrophic, but at the time I did not realize how important those moments were. Even with the low, I heard my CGM buzzing, but I ignored it because I felt fine.

The high number was in part a result of my first spinning class.  Before I started the class I checked my blood sugar. It was 248. This number is too high, but I figured the intense exercise would lower it (my first mistake) and didn’t want to drop low during the class. So I didn’t give any insulin and disconnected my pump.

When I finished the class, I took out my CGM Gigi, but it was giving me the out of range signal and hadn’t been tracking my blood sugar. I should have tested my blood sugar at this point, but I didn’t. I went home and ate a low carb dinner, but I forgot to bolus for the few carbs I did have, only making the situation worse.

It was now a little before 10 and I started to recognize the symptoms of a high. I took out my meter and tested my finger. 439. WHAT?! That can’t be right. I tried a different finger, 498. Shit. One more finger, 515. At that point a said four letter word that I will not write here. I immediately took out a syringe and gave myself a shot of insulin and changed my infusion set. At this point I started to feel really sick, the nausea had started to set in. I laid in my bed feeling awful. It wasn’t until around 1 am when my blood sugar finally returned to normal.

I honestly don’t know what caused the 22 or why I didn’t feel it sooner. I must have overbolused for my dinner and just didn’t feel the symptoms early enough. I didn’t believe the number on the screen at first, testing 2 more fingers for confirmation. What was so strange about this low was that even though it was so drastic, the symptoms weren’t as strong as even when I’m in the 40’s or 60’s. Probably why I didn’t catch it earlier in the first place. I know that much lower I am at risk for passing out, so I ripped open 2 packs of fruit snacks and chugged some orange juice. I didn’t care if I went high, I just needed my blood sugar to go up. And it did, it kept going up and up until I was woken at about 2 am with a blood sugar now in the 300s. Clearly stuck on a roller coaster of highs and lows, I gave insulin and went back to sleep, waking up to a low in the morning. Low, high, low…it’s exhausting. And frustrating. And annoying.

No more extremes. I can’t take it. Even though it feels like my diabetes is all I think about at times, I have to do better. I have to be more vigilant, more cautious, more disciplined. I know it’s my responsibility. I cannot have another night like the past 2 nights, I hope that I never see either of those extreme numbers again.