And What Am I Doing In This Hand Basket? #dblogweek

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Today’s topic: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

A little backstory: When I was at university and living in the dorm, this was tacked on my door.

Basket

 

There are days when I feel like we are all going to hell in a hand basket if we don’t stick together. Diabetes can be fatal, debilitating, and maddening. It has also brought me some of the best friends I could have ever asked for and a tribe of like-minded people.

So, my message is this: Diabetes can suck. Hard. But when you reach out and share the realities of living day-to-day with it, you find that others not only have the same experiences, but they may have insight on how to make it suck less. And as you learn to make it suck less, you find ways to raise your voice and share how it could suck less with people outside of the tribe… like policy makers.

I want to make diabetes suck less. And be real about it. And take action.

Here is how I try to make diabetes suck less: 

The Diabetes UnConference (This is where you can find your tribe and love them hard.)

Diabetes Patient Advocacy Coalition (You can make diabetes suck less for over 29 million of your tribe – including you, by taking action.)

And if I’m going to wonder what I am doing in this hand basket,

at least we will all be wondering together. 

 

 

Shout out to the amazing Karen Graffeo of Bittersweet Diabetes fame for creating this annual event (7 years running!). It’s wonderful to read so many posts and discover new blogs and new voices.

 

#dblogweek – Making Diabetes Change

1269975_69331015Perhaps it’s because my sleep patterns are off (a combination of jet lag that still haunts me and a four-year-old who thinks it’s fine to wake me up at 2am because [insert a four-year-old’s logical excuse here]), but when I thought about change, all that came to mind was the old SNL skit about First CitiWide Change Bank.

 “At First Citiwide Change Bank, We just make change.” 

 “We will work with the customer to give that customer the change that he or she needs. If you come to us with a twenty-dollar bill, we can give you two tens, we can give you four fives – we can give you a ten and two fives. We will work with you.”

The topic for today’s Diabetes Blog Week post is about change:

Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  

I’ve seen a lot of changes in the last three decades when it comes to diabetes management.

We changed exchange lists (Oh, how I hated the “2 Breads, 1 Meat, 1 Fat, 1 Milk” mentality!) for counting carbs.

We changed blood glucose meters that took two minutes for a reading to ones that give that reading in five seconds.

We changed syringes with long needles for short needles, mixed pork and beef insulins for analogues.

We changed insulin pumps for better insulin pumps and inhaled insulin devices.

I’m not saying that these changes are bad. They’re not. They’re prolonging lives and making diabetes more manageable.

But we’re still just making change. 

I want a cure.

 

#dblogweek – Zombies And My Diabetes Closet

I fear the Zombie Apocalypse.

752ff964193548fe4c6c4e4bedd35567Ever watch Zombieland? That’s pretty much what I expect life after Zombies to be, not the Walking Dead scenario. There are rules, according to Zombieland, that you must learn quickly to do – and avoid – in order to survive the brain munching masses.

The rules don’t cover diabetes and the Zombie Apocalypse.

But I have a plan.

Today’s topic for Diabetes Blog Week is this:

What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?

I have a diabetes closet. It was a linen closet once, but now the towels and sheets are relegated to a single shelf. Diabetes took over.

I won’t clean out my diabetes closet. Get rid of something? Nope.

In case of the Zombie Uprising, I will need every lancet in that box, every extra reservoir for insulin pumps that I no longer use. A bag of infusion tubing (But of course, no extra insertion sets, because I never seemed to change out both at the same time). What will I do with them? Sling shot material and projectiles. Finally going to put that extra tubing to good use!

Zombie McGuyver. That’s me.

You never know if those alcohol swabs that cascaded out of the box one day and landed at the bottom of my closet will come in handy to clean out a zombie bite.

I’ve got at least 10 cases to old diabetes devices that I can use to lob at their heads to confuse and stun those shambling husks.

Expired glucagon kits. I have two sitting there (and I’m proud of the fact that they are sitting there, because it means I didn’t use them!). I can whip those suckers at their feet, hoping to trip them.

Syringes with a prescription sticker attached to the box telling me that the syringes could apply for a driver’s permit. Would I use them now? Probably not. Zombie at my door? Totally.

Old meters. Back up emergency strips that I would really never use in an emergency, but what if… what if I needed them? Expired ketone strips? The vials are viable as weapons.

A tube of glucose gel that will never touch my lips because I watched a friend shudder and squirm after sucking one down in desperation. Not a resounding recommendation, so it’s a last resort that I’ve never had to use. Squirt that sweet yuck into their eyes!

Do I need to clean out my diabetes closet?

Nope. Saving it all as ammunition, because you know those zombies will have raided the pharmacy first before heading to my house and they’re carrying insulin to entice me out.

They want my brains… I want their pancreases. 

I’m ready for the Zombie Apocalypse. I’ll clean out my diabetes closet then.

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#dblogweek – Keeping It To Myself…. Sort of…

I missed yesterday’s prompt for Diabetes Blog Week (because I was so incredibly jet lagged), about what I Can do… I’ve talked a lot about what I CAN do with diabetes, so I’m taking a mulligan. And a warning… I will ramble. This is a total stream of consciousness post (which is scary, as I’m not quite conscious yet…).

Today’s prompt is this:

1251855_95290029Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?

There are things about my diabetes I don’t talk about on the internet…or with my family and friends….

or even myself.

But I have talked about these secrets face-to-face with other people with diabetes at The Diabetes UnConference.

For the first time.

Ever in my life.

One secret I had never uttered out loud before that moment, even to myself in a locked room, afraid that if I did, it would actually be real and that I would have to face it.

I shared that secret. I faced it. It’s real and no less scary now then when the words tumbled clumsily from my mouth.

That secret probably won’t be spoken aloud again by me…. ever. But I did share it with a small group of people who didn’t judge or immediately run and tell others or post it as a cautionary tale for the next generation. Because they had similar unspoken secrets that they shared with people in a room where they knew those secrets would stay safe and protected.

I share a lot of my life with diabetes. I’ve talked about how diabetes secrets can be harmful to my health, how not sharing certain secrets can be harmful to my relationships, but there are secrets that are kept just for me because I need them to stay that way.

Why?

They’re embarrassing.

Fodder for accusations or held up as ammunition by others about how NOT to live your life with diabetes.

And really, those secrets don’t help anyone but me. I learned from those experiences.

I am stronger for those secrets. 

We all keep diabetes secrets, even those who do not have diabetes. How we feel about people’s behaviors or attitudes and just keep quiet when you want to wrinkle your nose and say: “What the hell are you doing?” is a secret we keep. When we bite our tongues and don’t ask why they aren’t better educated on their own diabetes or even more honestly wonder how people survive with choices they make, it is a secret we keep.

Those secrets don’t help.

They hurt.

And I’m more about helping and lifting up others and educating those who want to hear it (and sometimes those who don’t even know they need to hear it) than I am about hurting others with the secrets about diabetes I keep.

But those secrets I have told? I’ve only told them to those who have secrets of their own and will keep my just as safe.

The Internet is not the place to share those secrets, because, as Edward Snowden has shown… the Internet is not a place to keep secrets.

My secrets stay with me and those who I entrusted at The Diabetes UnConference. My diabetes secrets are safe there.

Even the one that scares me.

#DBlog Week: I'm A Hack

1160561_45274657Let me cut to the chase.

I’m a hack.

And by that, I mean I have no “hacks” to share with you.

There’s no shortcut to being healthy with diabetes and living well. The tips and tricks that others share (and I happily use) are meant to help with the moments that need to be hacked. I’m all for that.

I’ve tried the shortcuts. The not eating. The eating too much and not taking insulin. The keeping it all in and not sharing anything with anyone around me about my illness. The trying to be normal. The ignoring symptoms and hoping they’ll go away on their own.

They don’t work.

So, I’m a hack. I plod along, some days with lighter steps than others, adjusting and tweaking and learning… and some days, this hack gets to have a flatline CGM sort of day.

But if the lows and highs get to be too much and the roller coaster is too fast, there is no shortcut. It’s back to basics:

  • Take the right amount of insulin.
  • Eat in moderation and count the carbs.
  • Follow the protocols set out by you and your medical team.
  • If you feel frustrated, talk with someone who will listen and not judge.
  • Check your blood sugars.
  • Have treatments for lows available.
  • Have ketone strips for highs available.
  • Learn.
  • Ask questions.
  • Love yourself. Hate the game, but love the player.

We’re all hacks when it comes down to it. Each of us have a unique body (including a less than stupendous pancreas). I’ve yet to meet someone who has the same medication/carb/exercise (laugh as you might) regimen. None of us are the same.

Which is why we have to stick together.

Hackers unite!


Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only!