Wake Up Call

My phone rang this morning at 4:21.  Here’s the conversation that followed…

Me:  What’s wrong, why are you calling me?

Friend:  Are you OK?  Your low alarm’s been going off.

Me (on the way to the bathroom to test):  I don’t know, nothing went off here.  Oh, it says 50.

Friend:  It’s been going off for a while.

Me:  I’m 57, so the alarm is right.  I’ll eat something and go back to bed.  Thanks.

My phone isn’t always making noise lately – sometimes a CGM alarm or a text notification will only vibrate, which typically won’t wake me up.  I realized on my way back to bed this morning that my friend had texted me 3 minutes before she called, and the first low alarm had gone off 15 minutes before that.  I ate 6 peanut butter M&Ms and went back to sleep, and from there it looks like my CGM went a little nuts; another alarm sounded loudly later in the morning.  Unfortunately the monitor thought my sugar was 45, the reality was actually double that. 

Did my friend, who I’ve called my chief sugar stalker, save my life this morning?  Probably not, because a 57 isn’t desperately low.  But I could have kept falling, and that’s not a risk either of us want to take.  The share feature is a big part of why I got a Dexcom in the first place.  It’s good to have back up, a safety net that makes all of us feel like I’m safer than I might have been before.  It’s not perfect, or it wouldn’t have gone off later for no reason at all.  As frustrating as those false alarms can be, that’s a risk I’m willing to take.  Fortunately my friends are willing to put up with them too.

I was low for a while the first time, though given the random looking numbers that followed I suspect the number started going up much faster than what was reported.  The second time the CGM couldn't have been much more inaccurate...what looks like a sudden increase in my blood glucose was after I recalibrated and told the Dexcom app it was wrong.  The red line is my low boundary of 55, the yellow at the top is 140.

That Was Unexpected

I hate public speaking.  No matter how many meetings I lead or presentations I give, I'll never be a fan of standing at the front of a room.  I'm good as long as I'm in a chair, but the second I get on my feet my hands start to shake.  If I’m particularly stressed out I’ll hear the shaking sound in my voice whether or not anyone else in the room notices.  Standing up in front of a crowd is definitely not something I volunteer for.  So when the local JDRF chapter asked me to serve on an adult discussion panel at their annual Type One Nation Summit last weekend, naturally I said…yes.

Why?  Don’t get me wrong, a large part of my brain twitched first at reading the request and again at the realization that accepting was the only good answer.  But I’ve had multiple conversations with JDRF employees about my disappointment that many JDRF events seem to be attended primarily by parents of T1s and by very few adults who actually live with this disease.  Finding out that over 100 adults had already registered for a panel with other adults was incredible news and I couldn’t say no.  The plan was for a few of us to share our stories and hope that having this opportunity to be together would trigger discussion.

Going into the day, I had a picture in my head of what a “panel” would look like.  We’d sit calmly at a table in front of a room and would never have to stand up to address our audience.  There would certainly not be a microphone present.  My hopes were dashed pretty quickly when I saw the room.  We had chairs, but no table to hide behind.  There was a podium centering those chairs, with a microphone stand directly in front of that.  Uh oh…

I survived.  My hands shook every time I accepted the microphone handed to me, my voice stayed calm, I spoke about my own experiences and choices with T1D, got at least one laugh from the room, and didn’t burst into tears or curl up into a ball in the corner.  The four of us at the front of the room covered a wide range of ages, time since diagnosis, and ways for approaching life with Type 1.  Questions in the room included topics about diet, exercise, support systems, needs from loved ones and more.  The big take away for me was that I’m definitely not the only one – T1D adults wonder how other T1 adults manage this disease, even if I don’t see them out and about at events.  If I’m able to help that conversation happen more frequently, I’m in and want to help.

My second take away was this:  I’m really proud of myself for what I did last week.  It wasn’t a huge commitment and required no prep other than showing up, but it was an experience I would have said no to in a heartbeat not so long ago.  I’m proud of myself for saying yes, and I’m proud of myself for actively participating and sharing my story in front of 100 people with a microphone in hand.  I didn’t see any of this coming, but it worked and without question I’d do it again.

Photo reprinted with permission from Clicks by Kat.

On a side note:  because it always happens to me, I often notice when another speaker’s hands are shaking.  In the session right after the panel, an endocrinologist from Yale spoke about advancements in T1 technology.  Though I would have loved to hear much more detailed information in her presentation, she spoke well.  Her hands were shaking.

Second note:  one of the questions to the panel was whether anyone on the panel followed a low carb diet, and I was the only person to say yes.  In spite of my typical diet, I joked near the end that my friend and I might be going for pizza after the Summit…so after explaining how well I do by managing Type 1 with low carb, a picture of lunch is below.  I think I earned the indulgence.