Diabetesopoly: The Living With Diabetes Game

.
February 3rd was Diabetes Art Day, and yes, Mom, I'm still late with my assignments. Some things never change. 

Much like the ubiquitous board game, living with diabetes is a strategic effort between the body, the mind and many external factors. As much as this piece shows many aspects to be considered by people living with diabetes, it also gives an insight into the complexity of living with it.

Larry and I collaborated on this board. Larry has been living with Type 2 for about 8 years and I've been living with Type 1 for 25 years. Needless to say, we've been around the board a few times.




Imagined by: Larry & Jamie
Medium: Digital (using Excel 2007)
Monopoly Copyright: Public Domain

I admit, our submission went beyond the norm, but what the heck. I think Larry and I have expressed ourselves quite nicely via this traditional office software turned alternative art form - a digital media and a simple game board. And believe it or not, Excel and lots of imagination were the only mediums used for this project. Ok, I admit, the cupcake image was 'borrowed'.

In our household, we express ourselves in two ways - words and music. Of course it can be argued that music is an art form, but does not work well in this format. As for words, by default, are somewhat off limits for the nature of this project.

This creation has been posted at this year's Diabetes Art Day 2014 Gallery. I urge you to wander over there at some point soon. It's definitely a worthwhile trip.

Now, for the uninitiated who might be wondering what Diabetes Art Day is all about, it is best summed up by Lee Ann Thill:

Diabetes Art Day is a web-based initiative for the Diabetes Online Community to “tell a story” about life with diabetes though creative visual expression. It’s a way for us to tell our stories so we can connect and share with each other and with our loved ones. It’s a way to generate diabetes awareness outside of the DOC by sharing artwork on Facebook, Twitter, blogs and community websites. Diabetes Art Day is for people young and old with any type of diabetes and their families, so children, spouses, parents, siblings, or anyone who is affected by diabetes can participate. For this one day, you’re encouraged to break out of your linguistic comfort zone, bust out some art materials, and make a piece of artwork – painting, drawing, collage, sculpture, an installation piece, a mixed media something or other, or whatever you can imagine. Whether you have lots of experience making art or none at all, Diabetes Art Day is for you to show the world what it’s like to live with diabetes in that “a picture is worth 1000 words” kind of way. 

So there you have it. Our Diabetes Art Day submission for 2014. We'd love to hear what you have to say about our alternative art expression.

Pausing to breathe

With holiday time upon us, I am reminded of the type of world that we find ourselves in, and the technology that is part of it. Whether the latest Nintendo, tablet or the handy robot vacuums that wander our houses, something is always competing for our attention.

Actually, I kind of wish my pump looked like this. Pump manufacturers, take note

When you have type 1 diabetes, even more technology makes demands on you everyday, all day. Remember those tamagotchis? Feed me, pet me, play with me now, or you will be sorry. If you treat me well, I might play nicely. For a while.

But there comes a time when it just seems to much. This past summer, this reached a critical level. My pump and CGM seemed to be nagging, demanding, day and night. One in particular went rogue. Rogue because there seemed to be no discernible benefit, because it was wrong much of the time, so after more lost sleep, I wondered what's the point. I put it aside for the time being, but when I upgraded my OS on my Mac, Carelink, which is used to upload boatloads of data, was ill prepared for the upgrade, and was deemed broken; the last straw. My colicky tamagotchi babies were laid to rest.

So I hauled out my Ping out of my trusty Dbox (my treasure box of diabetes supplies and retired equipment), programmed it up, ordered supplies, and I haven't looked back. Mind you, I still don't have a CGM but one day I will do something about that. I have mixed feelings about ramping up the technology again. I am rather enjoying the relative peace that the Ping provides.

I admit, some technology does improve quality of life. But one day, barring a cure (ha!) (sorry that was a cynical slip), I hope to only have to worry about the feeding and watering of a Diabetes Alert Dog. Not only will that dog give me peace of mind, but an occasional appreciative wag of the tail after a long walk, which would be much more than my CGM could ever give me.

Bad Word Wednesday: Redacted Edition

Infusion set failures. Let me tell you about them.

For those who pump insulin, you know what that can mean. For those who don't know, it can lead to high BG readings that don't want to budge, not because you had that second brownie and didn't bolus the requisite amount of insulin, but because some [redacted] piece of [redacted] plastic failed to properly insert another piece under my skin properly. But instead of, say, trying to deliver for 5 minutes, and then telling me, "Hey, over here! I'm not working so well!", it lets me carry on with my bedtime routine. Until…

4:30-something [redacted] a.m.

Beep beep beep. 

I roll over to check the phone on my bedside table. Not time to get up yet. I roll over to go back to sleep, knowing my trusty first alarm is scheduled for 5:55 am. 

Beep beep beep.

I reach over to poke my phone, trying not to wake up too much.

Beep beep beep. 

Then I realize that it's my [redacted] pump. I squint in the darkness, and see the dreaded No Delivery alert. 

No this is a perfectly acceptable notification if it is, indeed, out of insulin because I hadn't loaded it up with insulin. However, I inserted the set right before bed. Something had gone wrong with the installation of said set, and I had to do something about it. Now. 

[redacted]

So out of bed. Which means there's a required trip to the bathroom (yeah, because I am of a certain age), and downstairs to the Diabetes Supply Bin, unwrap a new infusion set, find a good spot on my body with my eyes squinting in the [redacted] too bright light of the dining room. 

Next comes a BG test to find out where I'm at.

16.9 mmol (300 mg)

[redacted]

... and a lot more profane words than that were going through my head. And [redacted] that, I'm annoyed and starting to wake up too. This is just a piece of crap. 

Nonetheless, I bolus the suggested amount and crawl back into bed. I think I noticed that it was just after 5 now. Less than an hour before the first alarm. 

Fast forward to breakfast time. 6:20 am. Time to test, and THIS is what I get?! 

[redacted]

BTW 15.9 mmol = 286 mg = not much [redacted] difference from 1-1/2 hours ago.

Ok, moving on....

Little Whispers

I am not a jealous person, or even an envious one.

Ok, maybe I'm lying a little bit.

I admit I feel a twinge of envy as my friends dig right into the lukewarm leftover pizza after a meeting, without a care in the world. They don't wonder how many carbs is in a Meat Lover's slice from Pizza Heaven, or how much insulin will cover that for the time being, or how much to extend a bolus over the course of several hours when the Post Pizza High comes back to haunt them.

I know it's childish of me, but I'm envious, just a little.

I wish I could sketch too//envy alert//: Source Unknown

On reflection of my "career" with diabetes, I can't remember ever having a good an in-range HbA1c. Ever. That's almost 25 years of numbers over 8% and sometimes much higher, representing blood sugars 10.2+ mmol (183+ mg). Ideally, we are told, someone with diabetes should an A1c of 7%*, representing blood sugars in range of 8.6 mmol (154 mg).

*Sidenote: This recommended amount is general, and varies depending on your physical condition, age, and a host of other factors. 

I am well versed in the concept that I should have a lower A1c. Really I am. Now it certainly is my endo's job to remind me of this, (although senility has not yet set in - I do recall this fact all by myself). But for some reason, just about every other medical professional seems to have a vested interest in what My Number is, often adding their respective specialty's list of what could go wrong if I don't get That Number down.

Life should be so easy, eh?

Just another side note for anyone about to jump on the lower-number-is-better bandwagon: Just because I have a higher A1c than "recommended", it does NOT mean I haven't been trying. The value of how much I try does not correlate to my A1c level.

So, when I see my fellow diabetes friends share Their Number achievements, I am truly happy, even excited for them. I know how much work goes into even lowering it by just a little.

One could actually argue that I don't know, because I've never got there myself, but I will leave that discussion for those eager to make that point.

But, as I celebrate those successes with my friends, there's a little devil, sitting on my shoulder, whispering in my ear, "Don't you wish that was you?"

However, I am a lucky person. I also have an angel sitting on my other shoulder, reminding me that I can do this, and perhaps one day I will be able count myself among those who celebrate our successes.

Envy is the art of counting the other fellow's blessings instead of your own.

 ~Harold Coffin*~

*See what I did there? Seriously, the author's name is really Coffin!