I Am Greater

There’s a tattoo I’ve seen all over the internet that’s popular with Type 1 diabetics.  The tattoo is simple, and looks like this:  I > /\ \/ (here it is on a t-shirt).  The meaning is “I am greater than the highs and the lows.”  Of all the things I’m likely to get as my first tattoo, I don’t think this is the one because I’m much more likely to go with a medical alert tattoo.  But I understand the thought process.  So much of what we experience as T1s is about avoiding highs and lows, correcting highs and lows, and often, trying to explain how highs and lows feel to friends who don’t have T1.  Everyone experiences the extremes in blood sugar in their own way.  At least right now, this is how they feel for me.

High blood sugar is the thing non-diabetics are typically aware of because that’s what doctors and commercials talk about.  Consistently high sugar over a long time can lead to blindness, amputation, heart disease…a whole host of bad things that nobody wants.  Short term, super high sugar can lead to diabetic ketoacidosis, or DKA.  This is hospital time.  I was fortunate that when I was diagnosed that my sugar hadn’t gotten to DKA levels.  A lot of people are diagnosed when they’re hospitalized in DKA.  When a T1 diagnosis is missed, I’ve seen too many stories about kids dying from the damage their bodies suffer while in DKA.  High sugar is no joke.

I don’t always know physically when I’m high.  One night recently after a dinner of Chinese food, the alarm on my CGM went off when I hit 180 and I had no clue that my sugar started shooting straight up as soon as I ate.  Fortunately the insulin soon took over and the curve turned back down right around the time my alarm went off.  When I do feel a high, a lot of what I experience is feeling like my heart is pounding out of my chest.  Truly, it’s a sugar high and the heart palpitations that go along with it.  Being high can make me irritable and hungry, which you’ll soon notice is an unfortunate theme. 

The highest I’ve seen my digit is in the 400s.  The first time was early after I was diagnosed and had no clue what I was doing.  I went to Mitchell’s ice cream with an almost empty insulin pen…but that didn’t stop me from having my treat.  Not smart, and I was flying high for a while before I got home to correct the situation.  The second time I saw 400 was when I completely miscalculated the carbs I was going to eat in pizza and breadsticks at my sister’s house.  Also not smart, and had me pounding water to dilute my sugared up bloodstream and waiting for my insulin to kick in before I felt safe going to bed.

The flip side of the highs is the lows.  Low blood sugar is a short term problem, and a scary one.  Your brain uses glucose for energy, so when my digit is 50 I’m not operating anywhere near full strength.  Being low can lead to disorientation, passing out, or most terrifying to me, it can cause seizures.  Anyone who knew me in high school can imagine that the prospect of another seizure is something hard for me to accept and a place I don’t ever want to go.  Lows at night can be so dangerous that parents of T1 kids set alarms and wake up through the night to check their sugar in part to avoid “dead in bed syndrome.”  That one is pretty self-explanatory.  Lows are also no joke.

Low blood sugar is something I didn’t comprehend coming into my T1 diagnosis.  When I met with the Certified Diabetes Educator at my endocrinologist’s office, she asked if I’d been low yet.  When I said no, she told me that I would and that I wouldn’t be able to miss it.  She wasn’t kidding!  My experience with low sugar so far differs between when I’m sleeping and when I’m awake.  When I go low when I’m asleep, I can wake up to feeling my heart pounding or to what feels like a powerful hot flash…broiling hot, crazy sweaty, and immediately suspicious that something T1 is going on.  Sometimes it’s the diabetes.  Sometimes…I’m a woman in my 40s and menopause isn’t that far off!  A low when I’m awake doesn’t come with a hot flash for me.  Typically, a low has me weak and shaky.  It makes me irritable and hungry…there’s that theme I mentioned earlier!  It can make me crave a major carb binge – I want pizza, ice cream and popcorn all at once.  If I’m super low, it can make me irrationally emotional.  This is sometimes the point where I wind up in tears and cursing T1.  The worst kind of low for me is when my brain panics.  As ridiculous as that sounds, it’s the only way I’ve found to describe it.  I can be completely in control of what I’m doing and explain to whomever I’m with that I know what I need to do to resolve the situation.  But at the same time, my brain is screaming “fix this, we’re dying!  DO SOMETHING!!!”  It’s a very primitive instinct that I’m conscious of, and it’s bizarre.

The lowest I’ve ever seen my sugar on my meter is 26.  I was just a few months into my diagnosis, had no clue what I was doing, and I have no idea how I didn’t fall over and wind up in an ambulance.  I was in Las Vegas with the friend who is now my chief sugar stalker, we had some margaritas with chips and salsa, and I guessed pretty randomly about insulin dosing.  Not a good combination and I’m fortunate that my friend was there to bring me chips, a roll, and…a beer to bring my sugar back up.  Now that I’m using a CGM, lows can’t sneak up on me quite the same way.  A couple of weeks ago I dosed for popcorn before a movie and settled down during the previews to enjoy my snack.  My body had other plans, and as I ate my sugar kept falling.  I left my seat so I didn’t interrupt the movie for anyone else and watched probably the first 30 minutes of “Jason Bourne” standing in the hallway to the theater entrance while simultaneously watching my sugar readings on my phone and chewing glucose tabs.  I ate popcorn and glucose and I was still falling.  Eventually the number did what it was supposed to do and got back over 100, but not before I fell below 40 on the Dexcom.  Anything below 40 doesn’t register a number, so the reading on my phone and that of all 3 sugar stalkers was just “LOW.”  The only symptom that time was I felt a little shaky.  No panic, no brain crisis, just focusing on managing the situation.  Sort of a controlled panic.  I don’t ever want to see that reading again, but if I do I hope I’m in as much control as I was the first time.

As I've said before, T1 is a roller coaster.  Not just the highs and lows, but the emotional impact from both extremes.  Highs are frustrating and feel like failure.  If I didn’t eat those fries at dinner, this wouldn’t happen.  If I calculated my insulin right, this wouldn’t happen.  Lows…lows feel like failure too.  If I calculated my insulin right, I wouldn’t be in this mess.  If I’d been eaten something to get myself a little higher before I went to bed, I’d still be sound asleep around 100 right now instead of lying here awake watching and waiting for the CGM curve to turn.  It goes on and on and will make you crazy if you let yourself think that way.  And that leads to the message that I am, that we are, greater than the highs and lows.  I’m going to succeed, I’m going to screw this up, and I’m going to keep trying because T1 is about so much more than a number.  I am much greater than any number.

This is what I saw on my phone that night at the theater before things turned around.  The trend line shows me dropping from somewhere near 100 to 40 in just about an hour.  I don't know why.

Every Day is the Same...but Different

Spending an evening with an old friend a couple of weeks ago, I realized how little people know about what goes into living with Type 1 diabetes (T1).  We ordered pizza, and when I thought I had about 15 minutes left until dinner I injected insulin #1 to cover the bread I was about to eat.  My body, the insulin and the pizza guy weren’t all on the same timeline, so my sugar dropped before the food arrived.  With falling sugar, I worked to balance the insulin with some M&Ms and glucose tablets to get my number up before dinner.  When I injected insulin #2 not long after that, my friend’s reaction was basically “wait, now what?”  That’s on me, not on her or anyone else — I’ve never told her about the details of what goes into T1.  How could anyone know about the constant battle if they haven’t watched in person or heard about it directly?  T1 can be a roller coaster or a calm drive through the countryside depending on the day.  This is my attempt to fill in some of those gaps.  It’s on the long side, so bear with me!

The first and last thing I do every day is manually check my sugar (a.k.a. my “digit”) on a glucose meter.  Before I got my Dexcom CGM last month, I typically poked my fingers somewhere between 8 and 12 times a day.  Now that I have the CGM I still have to use finger sticks to calibrate it at least twice a day.  Right now I’m doing that to start and end the day and somewhere else in the afternoon or evening.  If I go to the gym, I check right before I work out.  Because my sugar can drop pretty significantly during cardio activity, that’s the time of day I’m most worried about knowing exactly what’s happening and want to make sure my CGM is accurately reading my level.  The rest of the day, I’m able to check in with my CGM to see where I am, before and after meals, before and during meetings, and any other time I want to know how I’m doing.  I need to know where I am to know what I need to do to keep my sugar as close as possible to where I want it to be.

Where do I want my sugar to be?  In a perfect world it wouldn’t be any different than a person without diabetes.  For those who like numbers, that’s below 100 when I wake up, under 110 before I eat, and no higher than 140 after meals.  In practice that’s not always easy, especially that digit after meals.  That's because anything I eat raises my sugar.  That doesn’t just apply to sugary foods or high carb things that digest into sugar, like french fries.  It’s just about everything, including proteins like beef and chicken even in the absence of any carby stuff.  So for nearly every meal and snack, I need to take insulin before and/or after eating to keep my sugar from blowing up to 200 or beyond.  That’s insulin #1 in this story, the fast acting shots I take to adjust for food.  In a non-diabetic person, the pancreas works before, during and after meals to keep glucose in a healthy range.  In my world, I play that role with insulin pens and needles.  In diabetic terminology, those are called insulin boluses.  In my vernacular I’m either dosing or shooting up.  Eat food, dose.  Go high, dose again.  Go low and need to get back up to a healthy number?  Depending on the time and place, my solutions range from glucose tabs that are chewable sugar bombs in (not so) fabulous fruit flavors, to choosing a beer instead of a glass of dry (low sugar) wine during a night out.  The choices are many!  I will say there’s nothing quite like chewing raspberry flavored sugar at 4 AM…except the resulting taste left in your mouth when the alarm goes off 2 hours later.  However, I’ve yet to work up the motivation to get up and brush my teeth after a late night low!

Insulin #2 is my basal medication, or what I call my “nightly.”  This is a long acting insulin that is designed to keep my sugar fairly consistent in between meals, including overnight.  Its long duration of action means I only need one dose a day, compared to the original long acting insulin I took that was injected every 12 hours.  There are a lot of things that impact blood glucose other than food, including the release of hormones that happen naturally 24/7.  #2 is to keep me at a healthy base sugar level, and my dosage is independent of what I’ve eaten.  One guaranteed impact on that dose in my life is exercise.  If I walk on a treadmill at least every other day or so, my dose is lower than if I don’t exercise.  Cardio increases my sensitivity to insulin, so I take a little bit less when I’m working out consistently. 

Every day with T1 is a balance.  It’s a balance between food, insulin, exercise and all the other unseen factors in life and inside my body that can impact my sugar.  No two days are the same, even if all of my inputs to the process like food and exercise are identical.  That balancing act that my friend saw not so long ago happens every day, but I don’t tend to discuss it with many people.  It’s my routine now, even though there’s no such thing as a routine day.  Wake up, check sugar and dose if needed.  Eat, work, keep monitoring sugar via finger poke or CGM.  Dose for food, dose for unexplained highs, throw back some M&Ms or a bite of brownie to correct random lows.  Go to the gym to help manage sugar levels, but be careful to make sure my sugar is high enough going in that I don’t have a dangerous low that could cause me to pass out and fly off the back end of a treadmill.  Eat, socialize, sleep and keep checking sugar to adjust for anything known or unknown that’s causing the CGM trend line to deviate from a happy path.  Wake up tomorrow and start the cycle over again, wondering what tricks my body may have in store for the day.  And if you think I was joking when I said “bite of brownie,” I really mean that and I pulled it off recently at work.  It doesn’t take much, so willpower is important!  I eat M&Ms in increments of 1 at a time now.  Who knew that was possible?!

I don’t talk about any of this in detail very often.  It’s my grind, not yours.  At the same time, the longer I fight T1 the more I see the need to improve awareness.  I want my family, friends and the people around me to know about this disease and my experience as much as they can without living in my shoes.  I don’t want sympathy; I’m fighting T1 and enjoying my life at the same time.  But I do want to open a window, even to the extent that it’s possible with a blog post, into what T1 looks like.  There is rarely an hour that goes by without me thinking about my sugar, or the impact and timing of my last and next meal, or whether I need another insulin shot, or whether I could wind up with low blood sugar and have my brain let me down mid-sentence in a meeting.  This is Type 1, and until researchers come up with a cure, this is my life.  It’s all day, every day, but as I’ve often told another friend about fighting T1, “I got this!” 

On a not so side note, my sugar the last several days has been amazing, running most of the time between 80 and 120.  I posted a 24 hour graph of my CGM readings on the Beyond Type 1 app the other day and another Type 1 responded with “holy cow, what are you doing?”  Pretty cool validation of a really nice week.  Here's my last 24 hours as of tonight, I'm heading into the weekend in a great place.