Off the Dial

The Lie

“Everyone here is a big liar.” The woman put her hand on my arm and looked into my eyes.

It wasn’t what I expected after my talk on finding the funny in diabetes management.

“You just lied,” she insisted. “You said diabetes can’t stop you, but it can. If my son had been here, he would’ve gotten up and walked out.”

I don’t remember saying that (it’s not part of my talks) but this woman had clearly heard something that stuck with her.

“Okay,” I said. “Tell me your story.”

She did. And we have to help.

Her son is 17 and all he ever wanted, from the age of two, was to serve our country in the military. But when he was 16 and went to the recruiting office to get the information, they told him no. No type 1 diabetes allowed. Sorry, son, there’s the door.

He stopped caring. About life, about diabetes. He stopped checking blood sugar regularly, stopped taking insulin when he should. Last year, after the suicide of a friend, he tried to take his own life as well.

I met this woman for all of ten minutes. My first reaction (which I did not share) was pretty judgmental. It seems like the recruiting officers were the first ones to tell this boy he couldn’t serve. How could a parent let their child hold onto that dream for so long knowing he couldn’t ever do it? Did they not know? What does the dad, a Marine himself, have to say?

I’m glad I didn’t ask those questions. It doesn’t really matter how they arrived at this sad and dangerous time.  I couldn’t change that. But maybe I could change what came next.  I said, “Is there a chance we could redirect that passion? Find him something related to the military to care about?”

What would you do if this was your son? I used to be on the Board of my local USO. I’m calling them and some other folks I know in military support groups.  I feel compelled to help. This is not my son’s dream, but it breaks my heart to think of anyone, adult or child, with diabetes giving up.

I’m realistic. Some dreams aren’t going to happen. But this kid has a spark. If it doesn’t catch onto something good, he’s going to flame out. Diabetes is tough enough. He shouldn’t have to give up on every part of his dream because of it.

St. Louis

I spent this weekend in St. Louis as a speaker at a JDRF Chapter retreat. It was a wonderful experience and, for one moment, it was like looking into a mirror through a time machine.

A two year old boy perched on his grandfather’s shoulders, his older sister looking up at me from behind a picture book. The little guy recently diagnosed with type 1, the family finding their way. I couldn’t help but see us seven years ago.

Was Benny ever that small? How did we poke his teeny little fingers or find enough space for an insulin pump site?  I chatted with the family about the unique difficulties of a toddler with type 1. About diapers and childcare. About never knowing what a two year old will actually eat and figuring out whether that’s a high blood sugar-thirst or just an I’m hot and I’m playing-thirst. This little guy already had a CGM! That’s a great tool for a toddler. I was always worried that Benny wasn’t really napping, that he  was going low and passing out.

I met families with children of all different ages, of course. This chapter uses name tags with their JDRF Walk team names, which is really cute. I met Brian Coffey, dad to three kids with type 1, so Three Coffees, No Sugar. John, whose daughter was diagnosed as teenager, now a thriving college student, was Let them Eat Cake. So many more whose names I didn’t catch.

I was on the bill with Ironman Triathlete Jay Hewitt and author & journalist Moira McCarthy, two people I’ve followed in the diabetes community and who I admire very much. And yes, I did snap this picture almost to pinch myself I was on the same card as them! (how cool is that?!)

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Jay Hewitt is amazing. He talks about the challenges type 1 diabetes poses during the Ironman (140 miles of swimming, biking & running). He somehow takes this incredible athletic achievement (he’s done it 15 times!!) and makes it relatable to everyone in the room. “Make the bad thing that happens to you the best thing that ever happened to you,” he told us. Use diabetes as a challenge.  He says he always saves one last gasp of energy at the finish line to “step on the neck of diabetes and tell it, ‘you’re messing with the wrong guy.’”

Moira McCarthy turned what could have been a dry research update into a talk about life and love and diabetes. So many sweet faces and compelling stories. I had connected with Moira online but it was our first time meeting. After 15 years as a diabetes mom, she seems unflappable. But I also think she’d be the first to tell you flap happens.

My main presentation focused on the importance of diabetes connections. Of finding other people who get what we go through and trying to avoid feeling all alone.  I also did a breakout session on diabetes and humor. I did have some kind of weird allergic thing Sunday morning so I probably looked like I was crying (not really such a bad thing at a diabetes conference where it’s pretty easy to get emotional!).

We talked about technology and fundraising and what’s next. We signed books and made new friends. But my thoughts kept going back to that little boy on his grandfather’s shoulders. That was us. Scared, confused and feeling adrift in a new world of medical jargon and constant monitoring. I’m grateful, seven years later, to have found some balance in the shifting world of diabetes management. I’m even more grateful to have found a place in the diabetes community.

JDRF St. Louis asked me to come and speak this weekend and paid for my hotel room. Animas sponsored me and paid for my travel. I decided what to write and paid for my coffee.

Dexcom First Impressions

Just over three weeks in and I am so excited that we started using the Dexcom CGM.

 (Don’t know what that is? There’s a good explanation here)

First impressions? We love it. A CGM gives copious amounts of data, which is incredibly useful to a person with diabetes.   It also alarms when BG is going too high, something we’ve been struggling with this year.   We adjusted every single basal rate in November and were seeing better numbers before the Dexcom.  Now, though, I’m excited to react to a 200 instead of a 275 or even higher.  Of course, we’re also very happy to have an alarm for lows.

I’m impressed with how well it stays on. No issues at all with it coming off so far. We started while visiting my parents in Florida and Benny spent a lot of time in the pool. That was a problem with insets in the past, so I was prepared for it to come off (“just make sure you dive for the transmitter!!”). Even with 4 days of swimming for several hours at a time, it stuck fast. We use Skin-Tac as a prep but, so far, no tape over the sensor/transmitter.

I am disappointed that I can’t use the receiver on my night stand, or anywhere in my room. It’s just too far away and even near my door is out of range.  When we realized that, we hoped Benny would keep it with him while he slept, but we spooked him the first night out.  We set the high threshold too low the first night (before the CGM was really calibrated) and it alarmed three times, waking him up and freaking him out, before I just turned it off.

(My cousin is reading this and laughing. Her son with type 1 recently started on the same CGM.  She left me a voice mail that I didn’t listen to that first night. What did it say? “Set the alarms higher than usual. It will alarm more than you want, before it’s calibrated.”)

Benny puts the receiver it back on his belt with his pump first thing in the morning. He likes the alerts set pretty tight – the noise doesn’t bother him during the day.  We’ll eventually get the receiver back in his room – someone needs to hear the alarm if he goes low.

I’m also disappointed with how big and scary the inserter is. So far, Slade has put the sensor on Benny. I’m going to call my educator and see if she can spare an inserter for me to practice with. This part is harder than we thought it would be.  After six and a half years on a pump, I guess I thought he’d be used to all the stabbing insertions. We don’t use numbing cream for the inset any longer and, when he needs to, he does them himself. But the CGM needle is larger and seems to hurt a bit more.

(L-R) Animas inset inserter, quarter (for perspective) Dexcom sensor inserter

(L-R) Animas inset inserter, quarter (for perspective) Dexcom sensor inserter

The second insertion was pretty stressful – Benny almost decided he didn’t want a CGM anymore. But he toughed it out.  The third change went better; he really likes having it and this was his call all the way.  I’ve been asking him to think about a CGM for two years. I thought he was set this summer, but at our August checkup, he said no. I didn’t bring it up again, but in November, he told Dr. V he was ready.  I’m glad I didn’t push, I can’t imagine how tough the sensor changes would be if he wasn’t on board.

What else? Right now, we’re asking Benny to wear a compression shirt when he plays basketball, just to protect the two sites from bumps, etc as much as possible. He’s pretty active so we’ll see how that works out.  As usually, there have been some unexpected glitches  (that first night, last week’s lost receiver scare) but overall I’ve been thrilled with this transition.

This is goofy, but I’ll share. We do a lot of nonsense singing in my house.  If someone says “I hear music,” I have to sing “but there’s no one there.” We did a lot of “Baby it’s cold outside” last week.  Now  I keep asking Benny, “What does the Dex say?”(ring-ding-ding-ding-dingeringeding) and Slade likes, “Calibrate, calibrate, dance to the muuuuusic.”  We are so embarrassing.

Find My Dexcom

I am so excited to report all about our first two weeks using the Dexcom CGM.  But first I have to tell you about how we almost lost it. Yes, already.

A continuous glucose monitor (CGM) has three parts. The transmitter and sensor connect to each other and are attached to your body. The receiver (below) is separate and can be carried in your pocket or put in a case and worn on a belt. It’s about the size of an iPod touch.

dexcom2

The Dexcom receiver (also comes in blue & pink)

Tuesday, our school had a two hour delay because of the cold weather.  Even with the extra time, it was still chaos in my house when Benny left for the bus stop.  That’s when I realized I hadn’t taken one last peek at the Dexcom. Did he have it on?

I didn’t see the receiver in the house, but I couldn’t shake the feeling, so I texted our wonderful school nurse.  She confirmed, no CGM receiver, but Benny was sure he left the house with it.  So where was it?

At this point, I was at work about 30 minutes from school and home.  Slade walked to the bus stop and back. He looked in a few obvious places at home (under the bed, in the hamper, by the computer) but held off the urge to turn the place upside down.

Finally after an hour that seemed like a week, transportation staff found the receiver on the bus. The angels sang and no calls were made that day to insurance companies or diabetes supply groups! Slade drove down to Charlotte to pick up what we assumed would be a case with a broken snap.

Nope, turns out the snaps are fine, the case is fine. How did it come off? No idea.  Of course, now we’re double checking the snap when Benny leaves the house (he’s thrilled) and I’m looking into a backup case or two.

How’s the actual CGM working for us? I’ll have a full report soon, but I can say we all love it so much that we hated not having it for just a few hours.  Who’s coming up with the “find my CGM” app? We’ll be the first to sign up!