The First Five

5 years ago I was diagnosed with Type 1 diabetes. In that moment of shock everything about my life changed forever. I was terrified, I was devastated and I had no idea what this new diagnosis meant. I knew only 3 things about T1: it happened to kids, it meant injecting insulin, and I didn’t want it. At that same moment nothing in my life changed at all. I was still me, still had the same family and friends, the same job and the same interests. I still had the same life I had the day before.

Everything changed and nothing changed, and out of that illogical equation comes this unlikely result: my life got better. Bear with me on this, I don’t think I’ve lost my mind. All of the good things that were part of my life 5 years ago are still here…a family I love, close friends that I can count on, a job that keeps me challenged…T1 didn’t take them away. But on top of the good I already had, think about what I’ve added…I’ve met people and made friends in the T1 community and I’ve become involved in a cause that couldn’t be more personal. I’ve gained an increased focus on taking care of myself, and I’ve gained a patience with myself that continues to shock my mom when we talk. And not surprisingly, I’m much more able to appreciate every opportunity I have to do new things and make new memories, because I’m reminded daily that I could be here anywhere between 5 more minutes and 50 more years.

Is life all sunshine and roses? Hell, no! I don’t cry and yell anymore, but you could absolutely catch me shaking my head and talking to myself when my numbers don’t quite add up. It can be frustrating, but I don’t get angry or upset when that happens because even when I don’t know why something happens with diabetes, I still know that I need to shut up and fix whatever's going on.

In the 5 years since my diagnosis I’ve been able to do some pretty cool things. I took a second trip to Disney World with my mom, I was there when the Monsters won the Calder Cup, I went skydiving in Las Vegas and I’ve managed to finish 3 half marathons since the first one when I’d actually been told I had Type 2 diabetes. I’ve visited new places, gotten to watch my nephew grow into a 14 year old man child, and I moved from a pretty good job to an even better one. I’ve also gotten new technology, adding a CGM after 2 years and getting the upgrade from the Dexcom G5 to G6 last year. And I’ve gone from having zero clue about Type 1 to a place where most of the time on most days I feel like I can handle things. Those other times…I just keep muttering to myself.

How am I celebrating my fifth anniversary? First, I’m going to eat the things I rarely eat. A lot of T1Ds eat pizza and ice cream as often as anyone else, but it doesn’t work for me or my weight. For my diaversary…I’m choosing gluttony. Second, I’m planning a vacation to Cooperstown, NY. I’ve always wanted to see the Baseball Hall of Fame and I think this is the summer to make that trip happen. I’m planning to go by myself, a first for me. I suspect my reaction to a solo vacation will be a mix of love and hate, but I won’t know if I don’t go. I made a lot of great memories over the last 5 years and it’s time to get started on the next 5.

I follow too many Type 1 pages on Facebook and need to thin the herd. But sometimes there are topics like the one in the screenshot below that catch my attention. Being diagnosed as an adult gives me a different perspective than a lot of other T1s, and you can see my answer. A few hours after posting that I got a notification that my dad liked a comment I’d posted. I couldn’t remember any comments that day until I saw it…the thumbs up is his. Thanks for getting it, Dad. I’ve done some awesome things since I was diagnosed, but they weren’t in spite of Type 1. They were all things I would have done anyway, but I'm proud that I did them with Type 1.

Riding Flying Polar Bears

5 months ago I recorded an episode of the Juicebox Podcast with Scott Benner.  For those of you who have no reason to have heard of Scott or his show, his now teen-aged daughter Arden was diagnosed with Type 1 as a toddler.  His podcast focuses on T1D – Scott talks about how he and his family manage diabetes, he interviews people who work in the diabetes industry, and he talks to people like me about life with Type 1.  You can check out his blog and past episodes of the podcast at Arden's Day.

Until a year ago I’d never listened to a podcast on any subject and didn’t know that Type 1 podcasts were a thing, but I met a woman at the local JDRF Summit who suggested I contact Scott to talk about managing T1 with MDI – multiple daily injections.  I was curious and started listening to an episode every day at the gym.  Soon after that I reached out to Scott and we scheduled a call…we talked back in October and he posted our episode this week.

I won’t spoil things for you…if you want to know about our conversation you have to listen!  But I’ll tell you I had a great time talking to Scott, and I laughed again a bunch of times as I listened to the episode this week.  In some ways, we manage diabetes completely differently.  Scott’s daughter eats high carb foods that would make me gain weight if looked at them.  You know, foods that are pretty normal for a kid her age.  I eat a low carb, high fat diet I started long before T1 but that helps me reduce the size of sugar spikes.  Arden wears an Omnipod insulin pump; I use pens and do an injection every time I’m about to eat or need to bring my sugar down.  But the reality is that our principles in managing diabetes are pretty much the same – try to have basically normal blood sugars, don’t be afraid of insulin, don’t allow a high sugar to stick around, and most importantly…live life and enjoy it without spending all of our time focused on diabetes.  Life’s too short for that nonsense.

If you’ve listened to the episode, keep scrolling for an update since we recorded – no cheating!  If you haven’t listened yet either follow this link or go to your favorite podcast app to find episode 216 of the Juicebox Podcast.  It’ll all make more sense if you do…without listening, you’ll never understand this post’s title.  And I’m not explaining!  I can't show you a picture of a flying polar bear, much less me riding one, so here's one strolling instead.  Just imagine if he came flying over the Great Lakes and you could get a harness on him.  Come on, just imagine for a second...

You can keep going, now that you've listened and know why there's a polar bear here...

UPDATE:  I saw my endo Thursday, coincidentally just days after Scott released our episode.  My A1c is 5.1%, up a bit from last year’s 4.7%.  I’m not remotely unhappy with that number, it’s a great average and I’m doing well.  We recorded the episode not long after my last appointment, and you heard me tell Scott that my doc wanted to look at my Clarity reports^* – he wanted to see more detail than just a 90 day average trend because he’s convinced I’m running low blood sugars all the time and that those are bringing my average down in an unhealthy way.  6 months later, he didn't disappoint and wanted me to hand over my phone so he could see the details himself.  And…I don’t think he’s going to ask to see them again.  He was visibly surprised to see what I could have told him to expect…things are generally pretty consistent when I’m home and doing things my way.  Below is the overlay chart of the last 7 days that I found still open on my phone when I got home from my appointment.  I’ll keep the graph from my week on vacation with Mom to myself, it’s nowhere near this pretty. J

Disclaimer...they don't all look as good as this one.  There's usually a lot of consistency, but the last week has been exceptionally flat.  Normally there's a spike or two up to at least 150, if not higher.  This was particularly good timing right before seeing an endo who has trust issues.

^{* Clarity is an app from Dexcom that shows all kinds of different trends.  I can see data for individual days, overlays like the one above, look for patterns...and see more statistics than most people care to see.  It's a fun toy to play with once in a while.}

Another Pretty Great Year

After doing a look back at 2017 last January, I think I'll make it an annual tradition.  It’s amazing how much happens over the course of a year…and equally amazing how much of it you forget until you try to remember. 

 

What happened in 2018?  Some things are easy to remember.  Mom and I took our annual vacation, this year going back to our usual destination in Las Vegas.  We eat well, have the occasional cocktail, see a show, and this year the slots played nice with mom a few times!  I made a bunch of trips up to Michigan to see my family this year, including the fall trip to see my nephew in the school musical.  Next year when he hits high school the schedule will change but I still expect to be there!

Sports were a big part of the year, as always.  I saw a ton of Monsters games, met a lot of other fans and accumulated a bunch of player jerseys that I really don’t need but always wind up wanting.  I didn’t make it to Little Caesars Arena yet to see the Red Wings, but checked out the outside on a trip to Detroit to see the Tigers play.  I was there on a dream trip to see Alan Trammel’s #3 be retired, and had the chance to meet him and get a ball autographed.  No Tigers fan will ever forget Tram and 1984, and it was a thrill.  I mostly didn’t get teary, but it took a fight!

My friend and I successfully completed our fourth half marathon, though what I thought were shin splints turned out to be compartment syndrome and limited me horribly.  It’s still an issue, but after working with a physical therapist I’ve changed my gait and have every intention of finishing race #5 in the spring.  I saw a Cirque show here in Cleveland, another bunch of great concerts including Pentatonix, and I was mesmerized watching John Williams conduct the Cleveland Orchestra for highlights of his most memorable movie scores.

I saw the Gulf of Mexico from Biloxi and walked past the markers describing some of the incredible destruction left by Katrina.  I got to go through the Star Wars costume exhibit in Detroit.  I dog sat for 2 sweet girls, and carried the American flag out on the ice at the Q.  I got to eat my dad’s “famous” French toast (it should be!) and see friends I’ve had for years but still don't see nearly often enough.

What happened with diabetes?  I changed my long lasting insulin at the insurance company’s demand, I upgraded my Dexcom from the G5 to the G6, and added an Apple watch to monitor my blood sugar without touching my phone.  I got my A1c under 5% and kept it there at both of my endo appointments.  I wrote 13 blog posts on topics including the problems with my GP (The Bad Doctor and Correlation is Not Causation), why I don’t think that I’m fighting against Type 1 (I’m Not a Warrior) and the story about how lucky I got when I was diagnosed with T1D (My Diaversary).  I participated in the JDRF Type One Nation Summit and started getting involved in planning the 2019 version too.

What’s up for 2019?  That’s anyone’s guess.  But if my legs cooperate and my friend recovers well from recent knee surgery, we’ll be back for the fifth iteration of our half marathon tradition.  I’d like to try again to see a Wings game in Detroit and definitely another Tigers game.  I’m going to celebrate the 5^th anniversary of being diagnosed with Type 1, but I don’t know what that will look like yet.  I’m going to keep trying to dedicate more time and attention to this blog and my Facebook page, and to raising T1 awareness.  I’m pretty sure I’ll have fun along the way, whatever this year brings.  Oh, and I said last year that I wanted to go ice skating.  That was a fail for 2018 that I fully intend to rectify in 2019.  I’ll probably post evidence once I make that happen, so be on the lookout!  If I think of it I'll be sure to wear one of my T1D shirts!

It’s been another great year, and I continue to be grateful for those of you who pop in to see what’s going on in my life…whether with T1D or otherwise.   Over 800 times you clicked into these blogs posts, you checked out the links on my Facebook page and encouraged me to keep sharing my story.  THANK YOU.  Mom and Dad, I’m glad you keep reading too. J  Happy New Year!

Pictures left to right and top to bottom:

• Mom and I gorged on Ben & Jerry's in Vegas
• Meeting Alan Trammell
• Dog sitting for Molly and Gracie
• The new Dexcom G6
• After half marathon #4.  Next year I'm putting the Dex on the front somewhere...
• John Williams!!!
• He's not so intimidating now, is he?  Star Wars costume exhibit.
• My game worn Nathan Gerbe jersey from "faux back" night
• Gulf of Mexico from behind the hotel in Biloxi
• My sister's doodle...she's the only family member who poses for me!