Monday, April 20, 2015

Eleven Years Later, It's Time To Say: Goodbye, Indiana

We have been living in Indiana for a little more than 11 years now, but the time has come to move back to Michigan.

That's where we are from and it's where family is at, and once again we'll be Michiganders instead of transplant Hoosiers (btw almost a decade later, the question remains: WTF is a Hoosier?!).

We've always wanted to move back to the Metro Detroit area and that has been a plan we hoped to make happen at some point. We have flirted with the idea of a move back for years now, especially after I started working from my virtual home office about three years ago. But it was never the right time. Until now.

Actually, we reached a final decision during our awesome vacation to Michigan's Upper Peninsula last Fall and started putting the pieces into place, exploring real estate and other necessary items in order to make this happen. And here we are, ready to move back to Michigan in just a few short months.



Honestly, aside from the necessities of making sure the job-front and housing options are secure (they both are), the toughest part for me has been saying goodbye to the incredible Diabetes Community here in Central Indiana.  I've really found myself at home with the community here, and while I am excited about getting back to Michigan, it's bittersweet in that I'll have to find a new D-Community there and say goodbye to everything here -- including just being so close to the big powerhouse diabetes companies, Lilly and Roche where many D-Advocates have gathered for social media summits through the years.

And really, who can forget the Wendell Fowler Ice Cream debacle that exploded in the DOC back in 2011 after originating here in my area of Indy... ?! #TakeThatWendell

This local D-Community feels like a part of my family, and I'm sorry to say goodbye.

The move back "got real" over Easter weekend, when we told family and I also pulled the trigger on my resignation letter from the Diabetes Youth Foundation of Indiana, an org that I've been honored to be a part of as a board member during the past several years. This was really one of the toughest things I've had to do relating to this move, and I was waiting as long as possible.

Now, it feels all the more official that we're really leaving.

Our local Indy Adult D-Community is also something very close to my heart, and I've been proud to help coordinate and build this community during the past five years. We now have 100+ people connected through email and a private Facebook group, and the group continues growing with more networking and connecting with doctor's offices, educators and D-device reps in the area. I've also been proud of creating a local D-calendar that includes not just one organization's particular events, but combines all of the activities that the adult D-community might have an interest in knowing about.

Saying goodbye to this is also tough for me, because I know how easily these groups can fizzle out if the organizers or lead volunteers step away. I've often wondered about whether this could all be handed off or weaved into an existing org for infrastructure, but I've resisted that out of fear that it would taint the informal nature of these meetups. Last thing I was is for these to become clouded with a more traditional "support group" style, or with an organization trying to fund raise or push a message or have companies interfere with push sales motivations.

No, thanks. Not what this is about.

What happens next is certainly something I'm converned about, but a transition is necessary. I am hoping some of the local D-peeps will be able to pick up the reins and that is a work in progress.

With all of that being said, I'm very excited about the Southeast Michigan Diabetes Community. During the past several months, I've found myself discovering a few different D-groups online connecting the community in that area. Yet, like Indy, there really didn't seem to be one spot for the Adult D-Community to connect... so that will be something to remedy (and Facebook can help)! And it will be interesting re-discovering Metro Detroit's offerings relating to diabetes -- from endos and educators, clinical research hubs, the diabetes org chapters like ADA and JDRF, the ADA-run Camp Midicha that I went to as a kid, and just the many fellow D-peeps scattered around an area so much bigger than Indy.

As mentioned in a recent post after the Diabetes UnConference, it all comes down to bringing that peer support and D-magic back to our own local communities -- wherever that may be. And so, I'm looking forward to it, along with all the other adventures of moving back to the place we're originally from.

Eleven years has been a long time to be away, and as exciting as this is for us, it's also scary. Because really, we're familiar with Metro Detroit because that's where we grew up, but we are very much strangers who haven't actually lived there (only visited) for more than a decade. We left Michigan when we were in our mid-20s. We were different people, and at that time I wasn't very focused on my own diabetes or the bigger D-Community. Now in 2015, that's all changed. It's great we finally have the chance to get back to our home-state and put roots down in a place we've come to appreciate so much more after being away.

See you soon, Michigan... I'm looking forward to rediscovering what the D looks like in The D!


Monday, March 30, 2015

Our Indiana Trio at Diabetes UnConference

We all ended up in Las Vegas, but had no clue any of the others would be there.

Thanks to the Diabetes UnConference, I met up with two other type 1s from the Indianapolis area. One of them happened to be a longtime 50+ year type 1, someone I'd never met or heard of before. The two of us had never heard the other's name before, but at this event with almost 100 others, we found each other and made a connection that will stretch beyond Vegas and come back to our own community here in Indiana.

To me, that's the power of the UnConference.


This is what I want others to know the most, aside from what I've already written. That it wasn't about Diabetes Topic A or Topic B. Instead, it was about each of us. It was about connecting with others. Finding those conversations and being able to talk some initially, and then being able to continue that conversation outside of the conference setting itself and eventually back to our own corners of the world.

Power of the #VegasDust, as it were.

For me, I'm happy to have met many new friends while in Vegas and connected with many old friends I'd had the honor of meeting before. But it was the three-person group from Indiana that made really hit home the most about this event.

While standing in line that first day, a few handfuls of us were chatting. I was striking up a conversation with the person next to me, as we moved along doing whatever it was -- grabbing coffee, or waiting to step up to some display posters on the wall where we could write down some questions about any particular D-topic. A friend from Minnesota was talking with another woman I hadn't met before, and while I was aware they were chatting, I wasn't particularly paying attention to anyone but the woman I was talking to in line. And that's when I heard someone say "Indiana."

Yes, the lady that I didn't know mentioned being from there. And I spoke up, asking more. And as it turned out, were were both from the same area of Central Indiana.

She heard about it from another longtime T1 there in the group, but had never heard my name before. And same for me. It was so great, being able to find someone from the same area of Indiana right there in Vegas.

As it turned out, she is a 50-year Joslin medalist and at one point in the event the entire group stood to give her an ovation for her many years with T1D. I'm glad we were able to sit next to each other at least once, talking more and being able to exchange some hugs.

And that's not all. There was another friend there from the same area. He's a type 1 himself, and I'd been lucky enough to meet this awesome guy in the past because of his role at one of the Indy diabetes companies. We also had some good chat there at the UnConference, and so much of that will remain in my heart.

Before we all left, I made sure we could snag a photo together.



And we have promised to keep in touch, connecting through the Indy Adult D-Community.

That is what I hope can come from this UnConference, that so many of us can keep the conversation going and we can bring these types of conversations and meetups together locally in our own corners of the world. That it doesn't have to be a big UnConf event, but something we can organize locally over coffee, drinks, dinner, bowling, whatever it may be.

I am glad to hear word that there will be another UnConference in 2016, and there could be even another one on the East Coast at some point. That's great to hear. But before those times arrive, and whether they do or not, I'm so very happy to know that the three of us from Indiana were at the inaugural event. That we were able to connect there, and can continue what we experienced here at home.



Friday, March 20, 2015

A Dog's Perspective of the Diabetes UnConference Aftermath

I am very sad, and it's all because of this Diabetes UnConference in Las Vegas.

Hi everyone, this is Riley. And yes, I did say sad... because it took my daddy away for several days and he didn't take me, and now all he's been talking about are those "awesome people" he saw in Vegas.

He returned home early in the week, and even though we were very happy to see each other, I knew he had been with other dogs. I even saw them in a picture. There was Becca and Norm, and I have heard there was talk of many other D-dogs and even cats there at the UnConference.

Since getting home, Daddy has been sneezing and coughing quite a bit (he says he has a head-cold, but I'm convinced it's because his body couldn't handle the excitement of seeing me again...). And he also says there's a bunch of #VegasDust in his eyes...

That brings me to you, my first chance in quite a while to write a blog. So here I am: the Riley Dog!!!

Daddy has been pretty quiet about exactly what went on at this UnConference, because apparently they took some sacred vow of on-the-spot silence. But what he does tell me is that it was a great experience with awesome people, and there was so much laughter, tears, honest sharing, and hugs.


You can see the whole big group there, and I'm sure you'll be as shocked as I am that there were actually other dogs there, but for some reason I was not invited... it's a bit insulting, but I know Daddy says Becca and Norm were "on the job" and actually trained to recognize blood sugar swings, so they weren't just there wagging tails and enjoying themselves like I would be. Pfft... whatever.

And they apparently shared a lot of emotions, probably because there was talk about me and other pets. Because, what else could generate that much love, right?!


I am happy to hear that my name came up several times, particularly on the topic of exercise and even dealing with burnout and mental health. Apparently, I am very helpful in getting Daddy's mind off of things, and just being able to take me on a walk around the block helps him. YAY!!!!

Really, though, that's all he has really told me about what was shared. And I guess I'm OK with that. Because the weekend made him so very happy, even if he's sad now that it's over. Actually, I'm kinda getting a bit tired of him talking so much about how awesome it was... but hey, since I love him unconditionally, I can't really criticize too much.

Oh, and I am also told there was quite a bit of talk about beer... and drinking it too, and that one of his friends who actually works at a brewery gave him a red ale that was, as he says, "pretty damn awesome."

None of this beer talk should surprise anyone, because Daddy is pretty vocal of his love for microbrews that he loves almost as much as he loves me and Mommy...

With all of that said, I am happy that Daddy visited the Polaroid FotoBar store with his friends and made some fun photos -- including one of me! And he also brought some others home with his friends, and Norm the Alert Dog, too. You can see those below, along with some other fun photos that he's shared.




I hear Daddy say that he's going to write some more, including his "DiabetesMine post" that has now been posted over there. Since I'm his editorial assistant, I decided that this would be a good one to run over here on the same day. And yes, there will probably be more down the road... like how he says about meeting two other Indy D-friends out there. But I won't steal the thunder on those, since I really don't like thunder anyhow.

So, that's it for now. This is Riley Dog, wagging her tail and giving you a lick on the nose until we meet again.

Tuesday, March 10, 2015

Beta Cell Bash, in the Year of the Hoverboard

Today is my 31st anniversary since my T1D diagnosis as a kid. And as I've done for the past number of years, I went to a diabetes party this past weekend. It was the Beta Cell Bash.

Yep, that's seriously the name of it.

Actually, it wasn't specifically to mark my diaversary. It just happened to fall at this time of year. Once again, the B-Cell Bash was a... bash.

Meeting up with other fellow pancreatically-challenged peeps is a fun experience, and this past weekend was no exception. This yearly get-together was the 4th one that I'd been to and its the brainchild of Mr. Michael Schwab, a local Indy guy who's now in his fourth decade with T1D.

Sadly. there were no sightings of hoverboards or flying DeLoreans, and Marty McFly wasn't playing his guitar anywhere near the stage. Still, it was a fantastic time.

I have no clue how many fellow people with diabetes were actually there, but I know that I saw at least a half-dozen and conversations with a number of them. Last year, we know there was a total of at least 174 years with type 1, and I'd have to guess there was at least that this year.

No matter the D-presence, we had some good beer and music, and it was a Rollings Stones theme, so each local band had to play at least one Stones tune in their mix of music.

And yes, they were selling some pretty cool "F Diabetes" shirts - so I bought one for $15, and got a free beer out of it! I met a couple who was there because of their friends, who had a young boy diagnosed a year or so ago. The D-family wasn't attending, but when these friends saw the F Diabetes shirt, they were messaging back and forth and we had some good conversation before they bought a shirt, too. Lots of good people that night!



One of the guitarists introduced had a grandfather with type 1... and that just boggled my mind! How awesome it is that we're living in a time when PWDs can live to that age -- it's so great to me, and adds to the great stories of people like my friend Richard Vaughn who's almost to his 7th decade with T1D, and Dr. C. Kenneth Gorman who just received his 80-year medal. So great, and really inspires me to know that it's possible and that, yes, I can do it.

While there was a whole lot going on, one of the best parts of the night for me was the conversation. It was nice talking Dexcom with a fellow longtime T1 who's considering one for herself.

My regular receiver was connected to Nightscout (for the first time in 3 months), and with the belt case I have, the receiver isn't easily taken out of the case so I'm glad to have had a backup one connected to my G4 transmitter. That way, she could hold it and scroll through the screens for herself as we chatted about CGM options.

It was also a lot of fun for me to just sit and enjoy good conversation with another T1 friend locally, with topics ranging from anything and everything -- open-source, regulatory and R&D delay, the art of microbrews, music, diabetes camp, exercising adventures when it comes to living with D, and just general career paths. Not just diabetes, but life in general... that was refreshing, especially when it came to talking local microbreweries we've been to.

Of course, it was also fun to grab a lower-carb dinner before hand, and play with my Nightscout rig for the first time in a while. We even snapped some fun with photos...




And the awesome Melissa Lee decided to have some of her own fun with my photo posted on the CGM in the Cloud group on Facebook, and it had me rolling on the floor... oh, hell: ROFL.



Oh, the fun we can have with diabetes...



(btw, today's #dblogcheck day and so I'm looking forward to reading and commenting on a number of different blogs from peeps in the DOC... and hearing from you! Follow all the hashtag-using posts here!)

Tuesday, March 3, 2015

Dude, Where's My Meter Case?


So we went to the Dominican Republic recently.

This was a work-related trip for Suzi, and it was pretty much an all-expense and inclusive trip for roughly 4 days to the resort community of Punta Cana. I'm so very lucky because I was able to just go along for the ride. I've never had a passport, and so this was my chance to snag one and use it (grew up in Detroit, and have visited Canada and Mexico in the pre-9/11 days, but never needed a passport since I'd never entered international waters like this).

I did all the diabetes-related packing of supplies and prep, and after weighing all the tropical temp issues that could arise, decided to only take one opened bottle of insulin. I kept the insulin in the mini-fridge, rather than inside my meter case pouch at room temp where it typically lives. All was good for the trip, and my insulin pump worked well along with a few scattered MDI instances when I didn't want to be connected by the pool or ocean.

I didn't need to do many finger-pokes, since I was wearing my Dexcom and that was working well
enough for me.


Our final full day before leaving, I ended up with a Dominican-style stomach bug that knocked me on my behind. So, I spent a good amount of time in the room and then, the day of our departure, was about ready to head back to the winter weather of Indiana.

I pulled my insulin out of the fridge, put it back into my meter case, and put the black meter case into my front zipper pouch of my backpack. And we headed out.

Hours later, sitting in the airport waiting for our 2-hour delayed flight and still not feeling well at all, I decided to just do a blood test, since we only had about 30 minutes before the flight at that point. And digging through my backpack, I could not find my meter case. It was missing.

And that's when I realized not only did I lose my meter, doctor's note and backup insulin Rx, but the bottle of insulin... and I wasn't wearing my pump, since it was an MDI day. And my last injection: 4 hours ago, with my BGs hovering in the low 200s.

Well, fuck.

At home, I have more than enough meters as back-ups, including another Bayer USB meter and the same little lancing device I used. Not worried about the strips or anything else in there... except, my only bottle of insulin I'd brought for this trip. And the written Rx for backup insulin.

Double, fuck.

A brief airport tiff about my losing or leaving behind the meter case ensued, and it didn't really matter where or what happened because it was just gone. And we didn't have much time before the flight left.

I paid the extraordinarily high phone cost of calling my doctor's office back in Indiana to get an emergency Rx called in. Didn't know a specific pharmacy, but since we didn't have Internet access in the Punta Cana airport, the doc's office searched and found a Walgreens up near Chicago where we planned to stay the night.

All seemed OK.

Six hours later, I decided to phone the pharmacy once we landed in Chicago and were awaiting the bus to drive us back to NW Indiana. It was just before 9p, and that's when I discovered that apparently, the Walgreens pharmacy wasn't 24 hours as thought. And no, they weren't able or willing to transfer the Rx to the 24-hour Walgreens right down the fucking road, instead telling me I would have to have it called in the next morning.

Dexcom told me I was up around 400, and my last insulin injection was 8+ hours ago.

FUCK!

There was no one I could get through the night without insulin, and it was pretty much DKA if another option didn't present itself.

I contemplated an emergency call for help from the DOC on Facebook or Twitter, but realized that would probably spark more fear and panic than it was worth. I even thought about the Help Around app, but wasn't confident anything would come from it.

At this point, I was so very tired and just totally down on myself. I felt like shit, and blamed myself for it, and was scared out of my mind that getting insulin wasn't going to happen short of going to wherever the nearest ER was.

And yes, I took my frustration out on the second Walgreens pharmacist Pete who didn't appear to be able to help me, and insisted he give me his name so I could tell that to the ER doctors when I likely ended up there, on the brink of death. A little unfair, but that's where my mind was at.

We decided to not stay the night, but instead drive the three hours home to Indy. Despite the now-falling snowstorm and crappy slush-covered roads, most of which would be dark since we have to drive through the nothingness of Central Indiana where they don't believe in highway lights.

After the hour drive back to the hotel where our car had been sitting for four days, we got back on the road and headed home. It was approaching midnight.

That's when my wife mentioned something I hadn't contemplated earlier, in my insulin-starved and still-sick mind: Phone the on-call doc at my endo's office.

That worked, and we had her fill one at a confirmed 24-hour Walgreens in the next-nearest location on the path we were on heading toward Indy. We stopped halfway between Chicago and Indy, and after two attempts, found a hotel that wasn't booked. And we picked up the insulin, paying $150+ for the single vial while also politely listening to the nighttime pharmacist pitch one insulin brand over another that might be "cheaper."

Since I had packed my backup syringes in my luggage, we had all that we needed now.

About 2am, I finally had insulin in my system and we were ready to crash for the night. The stress, frustration, tiredness, high blood sugar and general stomach bug sickness were all at high levels -- not to mention that I hadn't eaten or drank anything at all in 24 hours.

The next morning, my blood sugars were fine. The sickness was passing, and I got some gradual food in my system by the time we got home to Indy about noon.

We tried to just laugh off the adventures, forget the stress and relax now that we were home on comfortable territory.

And that's when I dumped out the cotents of my backpack, and saw a black zip-up case fall from the covered up bottom beneath my Neal Patrick Harris autobiography and other stuff.

Yep, the meter case had been in my bag the whole damn time.

The whole fucking time.

That figures.

Apparently, I really did plan accordingly... I just didn't realize it at the time. I feel like an idiot, needless to say. And can't apologize to my wife for all the unnecessary stress and headache I tacked onto the return-home part of our trip.

But hey, at least I got an adventure and story out of it, right?