Monday, June 22, 2015

Trapped in a TV Show

A friend posted a question online the other day that got me thinking.

Certainly not a new question, as it's been going around online for years.

My answer: Well, it depends...

Mostly, on the rules.

Just how exactly am I going to be trapped in TV? Will this be like the movie Pleasantville, where I'm basically tossed into an existing story line but am really myself (except everyone seems to think I'm a particular character)? Maybe Quantum Leap, where I basically "leap" into other people's bodies and am confined to that reality and whatever limitations they may have (if they are a minority, or in a wheelchair, or a man or woman -- that's me for the time I'm in there)?

Or is it like Back to the Future, where I'm just plopped into some point and am just living my life as myself, except in the context of whatever show and time period we happen to be in.

These are important considerations in deciding on the show, I think. Because really, am I going to be a character or myself in that particular show? And if it's the latter, will I still be pancreatically-challenged and be living my TV character life with the additional adventure of managing diabetes?

Or do I suddenly just become a sugar normal?

The whole point about time is important, too.

While it may be fun to be transported into the world of the Brady Bunch for a month, I'd be putting myself into the late 60s and early 70s, a time when the "diabetes dark ages" was still playing out and there wasn't modern D-tech like blood meters, insulin pumps, and CGMs.

Sure, it'd be an adventure living in the world of Hell on Wheels, but then again that would be in the 1800s before insulin was discovered... so yeah, I probably wouldn't last a month.

Boardwalk Empire could be cool, but insulin was just making it on the scene, and so I'd probably be in the same boat because I wouldn't have access to this life-sustaining medication. Or I'd get knocked off by a gangster, since they were all over the place and I'd probably be in search of a good Prohibition-era beer to drink.

And that brings up an even more important big-picture rule question: What happens if I die before the month's up -- do I suddenly get pulled back to my own reality, or is my character just killed off and the show's cancelled?

That also helps me decide if other high-danger shows would be the best fit. Certainly, I wouldn't want to be on The Walking Dead, because I'd be the first to get zombified -- not even factoring in the "need to find insulin in an apocalyptic world" aspect. The same goes for Game of Thrones which is set in the medieval times, and with all the death and torture going on there, it'd be a bad month.

Probably best not to explore those kind of shows.

I really did love Burn Notice, but really I'd be a horrible spy and the danger factor is just too high even for that (assuming I'm either in that spy-group or just in danger by association). Smallville would also be interesting, and I'd certainly like to think I'd be safe by association to Clark Kent, but my luck I'd end up getting paired up with a meteor-freak or put in the crosshairs of some Lex Luthor scheme.

Maybe I'd be best to be in the world of How I Met Your Mother (before the ending episodes), which is basically this day and age and fun. A normal show, without much drama or danger... just good times, good friends, and so on.

Then again, thinking about all of this, I think my life is better than any TV show. I just need to learn to hit pause to cherish the episode a bit more at times, and maybe watch a few re-runs as I'm writing the screenplay for my future.

Friday, June 12, 2015

The Boston Experience

So, the big diabetes conference of the year with all kinds of science and tech talk and just "diabetes research" as a mantra has now come and gone.

I'm in Detroit following the ADA's Scientific Sessions, and have to admit my time in Boston was quite a bit of fun on top of all the interesting diabetes stuff being covered in an official ccapacity.

Here are some of the photos (I don't take many pictures in the moment, sadly), and captured some of what I experienced in Boston.

There Was Coffee (see also: Duh)

Lots of Walking (and Low Blood Sugars, Consequently)

Actually, that was a photo of the Walking Challenge app on the 2nd full day. I walked the equivalent of something like 36,000 steps or miles upon miles, and so my feet and legs are still recovering.

Yes, I wore my Dexcom G4 and had it hooked up to Nightscout for CGM in the Cloud.

But of course, my G4 sensor died and the only backup in my case got ripped off thanks to a fast-moving, unnoticed hotel wall corner that appeared out of nowhere and accosted me). But thanks so much to a good D-peep who had an extra on hand, and was willing to help me out. Thanks, Chris Angell!

Loved visiting the Joslin Diabetes Center for the first time ever.

Actually, I was in a rush to get there that day for a "Beyond Carb Counting" event, and as you might guess, I went Low and needed to inhale some fast-acting glucose tabs while listening to presentations about carb counting. Diabetes irony at its best!

Diabetes at Fenway Park (thanks to Dexcom, which held a fundraising event there)

You can't see the screen in this pic, but look below to get beyond the bright white light...

Thanks to Briley for snapping this photo!

Word is (from what I read on Kerri's blog, that there were Collector's Cards too, but I didn't know that. And I did enjoy a Fenway Frank while there. #LikeYouDo

There was other Boston fare, of course -- seafood, shrimp and New England Clam "Chowda" (see also: Mmmmm)

Yes, and Boston microbrew:

Diabetes History (the Year I was Born):

Diabetes History (Year I was Diagnosed)

The 80s were a Big Time in Diabetes:

Just a few friends from the Diabetes Online Community (DOC) I got to hang out with, although there were so many more and pictures just weren't taken of all those great times.

Thanks for a great time, #2015ADA and Boston!

Friday, June 5, 2015

Why I Fired My Endocrinologist, and What I Want in a New One

A couple of weeks ago, I laid off my endo because he wasn't willing to work with me on trying out the new inhaled insulin Afrezza.

How it all played out was unexpected and not how I would typically handle something like this, as it was a spur of the moment decision over the phone.

I had called his office first thing that day with two specific goals: to get a regular-check appointment on the calendar, and to have him consider my interest in using the new inhaled insulin product Afrezza.

In the first few months since Afrezza hit the market, I've been curious about trying it myself after hearing how it's a double thumbs-up for many patients in their D-management. I'm still skeptical and have lingering concerns about the long-term risks to the lungs, but nevertheless I want to give it a puff (ha!) for myself just to see.

Going in, I really don't plan to use it as my go-to meal-time bolus insulin. Rather, I simply want to see how it works for those stubborn sky-high blood sugars that take a really long time to knock down. And maybe to cover some high-carb meals (though I've been working to reduce those as much as possible).

In other words, right now I'm just interested in test driving Afrezza. And I think it's really important for as many patients as possible to have that opportunity, to learn about how this controversial new treatment performs in the real world.

That is what I wanted to talk about with my endo, whom I refer to online as 'Dr. Health Bug.' I really wanted to have this opportunity before heading off to the ADA Scientific Sessions this week in Boston.

But the return call I got from my endo's office that day -- quicker than most -- reported that this wasn't possible. I would not have access to Afrezza. The reason: "because it's too new."


My mind stumbled over this information, not knowing how to respond. "But it's FDA approved? And isn't that my choice to make, as long as I'm making an informed decision?!"

Apparently not, according to Dr. Health Bug.

What bothers me is not that this physician wouldn't just straight-up approve my prescription request without first seeing me and talking it over. No, I appreciate that he would want to be sure I understand all the pros and cons of using such a new and unique medication, one that is indeed pretty much untested in the real-world use as far as most doctors and patients are concerned. Afrezza was just approved and launched in February, so the scientific studies and scattering of patient testimony so far might not be enough to reassure the medical field at large over potential risks just yet. I understand that.

So I appreciate the caution.

But what DID bother me is that this discussion wasn't even something my endo was willing to have. Instead, I was told that there is an unwritten office policy of not yet approving Afrezza for patients because it's too new. Point blank. Across the board.

This is very troubling to me, and it was pretty much enough to push me over the line and decide to fire my endo on the spot (over the phone).

Truth be told, this was coming anyway -- and it has nothing to do with this particular doctor. In the short time I've been seeing him, I've always found him to be very friendly, responsive, and willing to work with me.

But my wife and I are on the verge of a move out of Indiana and back to Southeast Michigan later this summer, so a doctor change was coming soon anyhow. This Afrezza Rx issue just forced the issue now, rather than waiting that last month or two. I'm rather incensed about the way they're handling this.

To be honest, if we weren't moving away, I would probably hold on to Dr. Health Bug and make a concerted effort to change his opinion, but that's just not worth my time with barely two months left in the area. I did communicate my frustration to his office staff, of course, and am in the process of writing an official-sounding letter about how he -- and all endos -- need to treat patients as partners and offer them reasonable opportunities to try new therapies (!)

So here I stand, endo-less, stuck in a transitional spot that marks the reality that we'll soon be moving back to Metro Detroit after 11 years here in Indiana. We plan to be back and settled by August. It's a weird feeling, being in-between endos -- perhaps even more so than being in-between hometowns. (Odd how diabetes trumps everything!)

It wasn't all that long ago that I was in the same boat changing doctors early last year, just before I found Dr. Health Bug.

Luckily, all my prescriptions are secure for the coming months and if something does come up, I have a capable primary doc who can handle things in an emergency.

We moved to Indiana in our mid-20s and the endo I saw previously in Detroit is still practicing, but I'm not sure if we'd be a good fit these days. Fortunately, I already have two other potential endos lined up, thanks to great local connections and Southeast Michigan D-Community. So, I'm not worried like I was back in 2004 when moving to a state I'd never even visited for more than a couple days prior.

But I still find myself a bit nervous about "screening endos" and finding one with the essential qualities of:
  1. Making me feel comfortable as a person
  2. Thinking progressively enough to respect my patient POV and explore new treatment options.
Clearly, a big factor in doctor-choosing will be how receptive they are to listening and working with me; that's pretty much a deal-breaker. And hopefully, by Fall, I can get my hands on Afrezza for my own test drive and report back on how that goes.

The doctor-patient relationship is a two-way road, IMHO, and that's what I will be looking for in the coming months.

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This post was originally published on DiabetesMine in June 2015, as written by Mike Hoskins.

Monday, June 1, 2015

On The Road: Blood Sugars, Starbucks, and E-85 Fuel

These past several months have seen a lot more travel up to Michigan as we have been planning our move back to the state. Since we both have older cars, I've turned to renting some cars to save mileage.

Rental cars influence my D-travel world in small ways:
  • making sure I have the insulin pump site and CGM sensor connected in places that don't get nudged by the stranger seatbelts
  • making sure the devices themselves are accessible
  • ensuring there's a spot on the door or console to put my G4 receiver for easy-viewing-and-access; or even an extra cupholder allowing for both my coffee and D-device.
  • ID'ing an additional easy-access spot for glucose tabs and a granola bar/cracker-pack in case of Lows while driving.
My meter case is usually within reach on the passenger seat or in my nearby briefcase or bag, so there's no need to do anything different as far as my meter's concerned.

Of course, any of these drives pretty much involve some key "need to know" points for me no matter what type of vehicle I'm driving -- gas stations, coffee spots, and locales that have Wi-Fi in case I need to tune in online and get some work done while traveling.

Usually, I plot out my blood sugar checks before I leave and for these every-few hour stops. I tend to follow the same routes, and so I've come to know where the best places are to find a Starbucks that I can either drive-through or go inside, a gas station and even some free WiFi like a Panera or Hot Spot to fire up the work laptop.

My CGM is usually with me on these drives, and so I've got the continuous stream of data flowing to the receiver that is nearby and visible -- especially when I'm wearing my Pebble Watch that has CGM in the Cloud capability, and can just keep tabs by looking at my wrist on the steering wheel.

For some of these recent drives, I've managed to snag a car that needs E-85 fuel and so that's thrown a monkey wrench into my plans. These E-85 gas stations aren't all over the place, and they can be tough to find. It requires a lot more advanced planning, and I've been using an E-85 locator app or this handy site while on the road to know where the nearest fuel station is at selling this type. Unfortunately, even when I find one with that hallmark yellow pump handle, a lot of times it's out-of-order or completely empty -- have even found some of the fuel stations aren't even operating anymore.

This has made it tough to plan ahead, and as a result I've been changing up the driving routine and not stopping as consistently as I was at other locations for Starbucks, fuel, and WiFi -- meaning, it's messed with my D-management while on the road.

Thanks for the image, Google.
Seriously, if my blood sugar testing was as reliable as these E-85 locations are, I'd be screwed in knowing where my BGs are at on the road. Hell, if my insulin was dependent on the access to E-85, I'd be dead.

At least that Starbucks logo can be found on many highway signs, even they're a lot easier to find than E-85 stations that actually have fuel on tap... (although, to be honest: the Starbucks app and my Google Map sometimes lead me to non-existent coffee spots or ones that are annoyingly housed in grocery stores). But, still. Hellava lot easier to find, pretty much anywhere.

I'm just glad I don't rely on these E-85 stops to test my BGs or know where things stand. At least I'd know that if my D-management while driving was as consistent as Starbucks, I'd never stop testing because they're everywhere along the way.

OK, now that I read this whole post from the start, I realize something: There's no particular point. Except that I'm not a fan of E-85 requiring cars, and that I want to avoid renting these in the future as much as possible.

Maybe I'll just leave it with "Test, Don't Guess... Unless you're waiting for an E-85 station to fill up, and in that case you'd better Guess or just pull over to the side of the road and check, because who the hell knows when you'll have another chance."