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.

 

 

 

Advertisements

A scary situation (told using bitmojis)

I recently found myself in a very scary situation as a diabetic. Let’s just say that I was about to drive myself to the hospital for my blood sugars, which I’ve never had to do before. Spoiler alert: I didn’t and everything is fine now, but it was still a frustrating and slightly alarming afternoon.

It started at my company picnic. It was a beautiful spring day and I was happy to be outside with my coworkers.

image

But my blood sugar was high and rising fast.

.image

I had bolused for my lunch and figured it would eventually come back down. I was away from my CGM playing frisbee, running to catch it, and figured the activity would probably help lower it too.

image

Not a frisbee, but closest I could find

After playing for close to an hour, I checked my CGM, but instead of my blood sugar going down, it was still going up.

image

I corrected for the high giving more insulin and headed back inside to the office. My CGM started to point downward and I figured I was in the clear.

image

As soon as I got back to my office, I went straight into a meeting. I sat there trying to pay attention to what was being said, but I was starting to feel nauseous and out of it. I felt so sick, I knew something had to be wrong.

image

Luckily the meeting was short and I immediately checked my blood sugar number again, this time it had risen to over 500! I was shocked!

image

I texted my dad and my sister (who is a nurse and soon to be a nurse practitioner) and filled them in. Then I rushed to the bathroom and gave myself a shot and changed my infusion set.

image

I went and told my manager that I had to leave work early. I decided that if in one hour, my blood sugar wasn’t clearly going down, I would drive myself to the hospital. If all the insulin I had been giving wasn’t working, I knew I needed to get help.

image

I got home and checked my ketones, which looked fine. Then I got a large glass of water and laid down on the couch, praying that my blood sugar would start to drop. About a half an hour later, I started to get some good news. And as it continued to fall, I gave my dad and sister a play-by-play.

image

I was slightly bummed that I was missing my weekly bootcamp workout class, but I was just so relieved that my blood sugar was coming down. And as it dropped, I started to feel better physically too.

image

I continued to lay on the couch, taking it easy as I watched my blood sugar fall. Soon it was dropping double arrows fast.  I started to worry that I may have given too much insulin and I was going to crash, which has happened many times before. I just wasn’t in the mood to be caught on a roller coaster of highs and lows.

image

But finally, after about a total of 3 hours later, my blood sugar was almost completely back to normal and I could finally relax.

image

So everything was fine and life went on, but it definitely was an experience that I hope never happens again!

Missing puzzle pieces

I’ve felt like Goldilocks lately. Although maybe a Goldilocks with brown curly hair and way less luck.

I’m starting to have issues with my new endo. Again, the issues that I am having are less about the specific doctors and more about my frustrations with doctor’s and the office not utilizing the technologies that are available to them to their full potential. And misusing the ones that are.

Like most T1Ds, I have a lot of devices that carry a lot of data. And those devices are able to download their information when connected to a computer. But you get slightly different information from my pump (finger prick glucose numbers and insulin delivery amounts) than from my CGM (glucose numbers from the sensor) and I don’t always think that the CGM is the most accurate, especially at the beginning or end of the cycle I wear it.

At my new endo office, my doctor downloads my CGM and pulls up a graph of the last week. She doesn’t take my pump or meter, in fact, I once asked why not and she wasn’t even sure she had the right equipment to download from the pump. I completely trust that my doctor knows what she is doing and her recommendations do make sense. But I’m often left wondering if the recommendations would be the same if we were looking at 2 or 3 weeks worth of data or even looking at glucose numbers from my meter (which are on my pump) in addition to my CGM.

On one hand, I’m grateful. I remember when I was first diagnosed being handed a little log book that I would have to manually write in my glucose numbers. But on the other hand, I’m frustrated with the way things are. I want integration. Maybe it’s time that I align my pump and CGM to compatible companies. Then at least all 3 of my devices would be talking to each other for a more complete picture. But I’m lazy and don’t want to learn a whole new pump or CGM system when I’m generally satisfied with both separately.

And while part of the responsibility is fully on me as the patient, another part is on the doctor and the offices to keep up with changing technologies so that they are effectively and accurately using the data that is available to them.

I feel like my diabetes is a puzzle and my doctor is only looking at a handful of pieces when telling me what to change. You’re looking at the trends in my blood sugars, but you’re not looking at my boluses throughout the day. You’re not looking at the foods I’m eating (which I have been tracking in a separate app for the past 6 weeks) or exactly when I eat them (besides asking me generally when I eat). You’re not looking at when I’m exercising and what kind of exercise I’m doing, when my cycle is, when I got sick, and even when I was feeling extra stressed. My numbers are all important, but alone, they lose some of their meaning. You’re looking at my blood sugars essentially in isolation because:

A) that’s the data that’s available to you
B) we only have a finite time together so you aren’t able to ask me about all these other factors
C) there is no universally used platform that can integrate this information easily for you

I’m frustrated. But I’m also hopeful. I know that today, my data is more available, accessible, and interpretable than it was 10 years ago. But I know we have a ways to go before every office has the equipment, the skill and the motivation to look at the whole puzzle for every one of their patients, and not just a few pieces.

Feeling low

I buried my head in my pillow, the soft fabric muffling my frustrated screams. I hate it. I hate it, I hate it, I hate it.

I was low. AGAIN. It seems to be the trend lately. My efforts to keep my blood sugars from spiking has resulted in more lows. Lows that seem unexpected because I really thought everything I was doing seemed right. Lows that have been incredibly disruptive, making me stop whatever activity I’m doing. Stubborn lows, that a couple glucose tablets don’t seem to solve. Lows that wake me up at night, lows that won’t go away, lows that leave me feeling awful. And upset. And frustrated.

I don’t want to treat the low. I’m tired of stuffing my face with sugar, not because I want it, but because I need it. I’m tired of working so hard in my workouts, only to have to later eat everything I burned off or sit out because I can’t continue with a low. I’m especially tired of eating when I’m not hungry and feeling awful while I wait for my blood sugar to stabilize.

I can see the extra weight creeping on, and I hate it. I hate that I don’t have a choice when I’m low. I hate that those forced extra 80 calories of my fruit snacks add up. I hate that insulin makes it harder to lose weight. I hate that these lows are often then leading to later highs, sending me on a blood sugar roller coaster. I hate not feeling my best.

I’ll talk to my doctor, I’ll make adjustments. We’ll work to get rid of these lows. But for now I just want to scream into my pillow and wish for the day when all of this will disappear. When sugar will just be sugar and not a substance that often feels like its controlling my life.

Some days, weeks, months are better than others. I’ll make it through this rut, I know I will, but today, right now, I really hate my diabetes.

Strip Safely & Diabetes Art Day: Strip Tease

Diabetes Art Day has collaborated with the Strip Safely initiative to raise awareness about the issue of test strip accuracy. As stated on the website, “The goal is to collect a body of images that capture the emotional experience of relying on inaccurate test strips to make decisions about food, activity and medication that affect our immediate and long term health outcomes.”While the campaign urges people to send letters and use social media to get the message out, Lee Ann, the person behind Diabetes Art Day, recognizes that printed letters just does not capture and convey the emotion the way visual art can.
Inaccurate test strips is a huge problem, putting diabetic’s health and wellbeing at risk. We need more stringent accuracy requirements and the proper process to remove those that don’t meet this standard. It’s an issue that people need to know about. This edition of Diabetes Art Day is working to do just that, to bring awareness to this important issue so that action may be taken to ensure test strips and meters meet regulatory requirements.
My artwork for this Diabetes Art Day plays off the words, “Strip Tease”. While there is some humor involved, it points to the important issue of using test strips that are safe and accurate rather than those that may be deceiving and therefore harmful.

You can check out the gallery of images for this special Strip Safely Diabetes Art Day here.