Diabetes: Defining Moments

minimal-moments-20-1576649-639x424Most of us can single out the moment in our lives with diabetes when, in a blink… a heartbeat… a breath, everything changes.

Diagnosis.

It’s easy to say that’s a defining moment. That’s an automatic walk to first plate, a “step right this way and skip the line…” and a golden ticket to the show.

No one is ever the same: family, friends, and most certainly not you. You house your soul inside the body that betrayed you. You’re stuck with it.

But it’s not just that moment, although it’s a precursor of moments to come:

  • The involuntary twitch of your muscles, not knowing it signals the first hypoglycemic episode of many. Fear rises in time with the pounding in your ears. You will never be the same.
  • Blurry blown out windows of your world after an eye dilation when the ophthalmologist gently shares news you never wanted to hear. You will never be the same.
  • Dreams crashing to the ground the day you realize you will never become an Air Force pilot. You will never be the same.
  • Your first arterial blood gas draw for possible DKA. You will never be the same.
  • The callous comment of an uneducated medical professional, telling you that you will die earlier than you ever imagined. You will never be the same, even though you have been told otherwise.
  • The ache of your body, your mind, your heart understanding that this disease is not just yours to hate as your husband holds you while you sob. You will never be the same.
  • Hearing ignorance spouted around the corner when they think you’re out of reach, knowing that you could spend the rest of your life trying to change their mind. You will never be the same.

And then you realize that there isn’t a single defining moment when your life changes forever with diabetes.

It’s every moment.

Our lives are forever changing.

Our diabetes is forever changing.

I am learning to embrace these moments and I change with them. How many of these moments can you embrace?

  • Supporting others through their own seminal diabetes moments online and in person. You will never be the same.
  • Achieving a deeper understanding of how everything interacts with diabetes and managing the moving parts. You will never be the same.
  • Loving the soul within the house that diabetes tries to break down. You will never be the same.

These can also be our diabetes defining moments.

All of them. All the time.

But it is important to remember this above all:

We change based on these defining moments, but they do not define who we are. 

It is all right to never be the same. 

 

 

 

 

 

 

 

 

 

 

 

 

Do As I Say, Not As I Do

ready-to-go-1472989-640x480When it comes to “organizing my diabetes” and making sure I have plenty of extra supplies when I travel, I’m a convert to being over prepared.

I had an insulin pump failure almost a year ago while at a conference. It could have been disastrous if I hadn’t been standing next to someone who happened to have the same brand of pump and happened to have brought her “travel spare” pump. (It was a diabetes conference, so the odds were slightly higher that this might be possible.) However, if she hadn’t been there, I would have been up a creek without a paddle… or long-acting insulin… on a Friday night.

I talk about being prepared for the unexpected and traveling with diabetes. It’s easy to talk about it.

My “go diabetes!” travel bag (lovingly packed in a ziplock plastic bag for easy viewing by TSA) has pump supplies, insulin for the pump, back up insulin pens (both short and long-acting), pen needles, a syringe (for McGuyver purposes) blood meter strips, and all the other fun items that we lug around just in case. Depending upon how long my trip is, that bag may be accompanied by a second “go diabetes!” travel bag. I’ve learned my lesson.

Or not. 

I carry glucagon in my purse. (Not that a stranger is going to rummage around in my purse if I’m passed out, but family knows it’s there.) I throw insulin pens in my purse, even though they don’t get used often. An extra infusion set. What don’t I carry?

An extra pump body and insulin cartridge for the Asante Snap pump I refuse to give up just yet. (I still have supplies, so I’ll use it until I have nothing left. Boo.)

We weren’t going far yesterday. The Kid and I headed up to my parents’ house to visit; a two hour drive at most. While on the highway (of course, traveling exactly the speed limit), my pump alarmed.

“Low power…. change pump body soon.”

The Asante Snap pump was brilliant in incorporating the battery into the pump body, so when I replaced the body, I got a fresh power supply and fresh cartridge of insulin. The pump body is changed every week. This was a new alarm for me. And I had changed my pump body two days before.

“Well, that’s another thing to put on the list when I get home this evening.”

Less than ten minutes later, a high-pitched screech had me scrambling to pull the pump out of the clip case on my hip. The pump was dead. Pining for the fjords.

“Blech.” Please note: this was not the word that I used.

I spent the rest of the drive doing calculations of IOB and looking at my CGM. Arriving at my parents’ house, I explained the situation and that I needed a few minutes to figure out what I needed to do next, because… I had no clue.

You see, I haven’t taken a long-acting insulin in 16 years. In fact, the longest amount of time I have been off of an insulin pump was for 12 hours, during the prep and c-section of The Kid and I was attached to an IV. I’ve never done a pump vacation or an untethered regimen.

I didn’t have my “in case of emergency, take X units of Lantus” notecard and even if I did have the piece of paper, it wouldn’t have been correct; taking Invokana has changed my total daily dosage.

I called my CDE and left a message. I texted her as well, hoping that she’d see that before she got the message. Then I crowdsourced/hiveminded/asked my DOC friends for what they would do, because I just didn’t know how much Lantus I should take.

In a few minutes, I had varying responses (with the “your diabetes may vary” caveat that we all give) and then the text from my CDE came through…

“Do you have insulin on you?”

“Yes, pens of both.”

“Do you have pump supplies at home? Will you be home today?”

“Yes and yes.”

And then it hit me at the same time I read her next text:

“You can take the fast-acting as a basal in small amounts like your pump basal until you get home.”

I microbolused for the rest of the day, checking both my CGM and fingersticks. (My basal is less than a unit per hour, so adjustments were made.)

Got home, changed my pump body, and plugged back in. It was like nothing ever happened. Back to the status quo.

And I was humbled.

My goal for the rest of the week?

  • Get the correct estimated dosage for Lantus in case something does go wrong with my pump again.
  • Create a purse “go diabetes!” bag with a pump body.
  • Thank my friends for the great advice and the non-judgement.

Do as I say, not as I do.

I may talk about being prepared, but now I have to learn to walk the walk, instead of just talking the talk.

Death is Rude.

IMG_5536This has nothing to do with diabetes and everything to do with diabetes.

My Facebook feed slapped me in the face last night when it unceremoniously announced that an acquaintance had passed away less than a half hour before. (A friend had posted it under his account, as this is the fastest way to get news out these days. Facebook = town crier of immediate online obituaries.)

He and I had been introduced through a mutual friend a while back, having much in common: same undergrad but a few years apart, same taste in art and music, etc.

Our mutual friend had let me know privately that this very cool guy was also living with a colon cancer diagnosis, but that he wasn’t openly sharing it. I respected both her confidence and his right to not share it with the world of Facebook, and instead enjoyed images of his travels and mentions of bands he enjoyed.

He and I joked in private FB messages over the last year that I was following him out to the West Coast when our trips to the same city (and the same museums) were a week apart. “So close and yet so far away,” I laughed. “Next time,” he said.

Death is rude. 

My acquaintance’s untimely death has impacted me harder than most. My feelings of sadness due to a life interrupted, my anger at a disease that has cost me friends and family, is amplified by the memory of another rude death: the creator of the podcast music behind diabeticfeed, the podcast that brought me to the DOC.

When John and I chose our music for the podcast, we had no idea that Derek also had Type 1 diabetes. We just thought his music was amazing. We interviewed him for an early diabeticfeed and I was struck by how amazingly talented he was… not only was he a musician and a brilliant blogger, but he was also pretty damn funny. We kept in touch on Facebook and when he was diagnosed with colon cancer, we were shocked. His death, when it finally came, was carefully announced on his blog, written by him and sent by his friends as a final message.

John and I have both had moments since his death that we don’t expect. A recommendation to follow him on Twitter under my new account. His music popping up on a random shuffle. A picture of him when his family posts on his Facebook page. There hasn’t been a single time when I haven’t heard the opening riff of his guitar when listening to an old diabeticfeed podcast that I haven’t thanked the universe for being so random. Then again, I don’t believe in random, so I’m not sure where that leaves me.

As we share our lives online, we also open ourselves up to the rudeness of death. It happens with our own diabetes online community. It happens in every community. Like I said… this post has nothing to do with diabetes… and everything to do with it.

And so I take a moment today to cry for those who thought that death wasn’t rude, but just simply impolite… and they went to travel with him.

“Next time.”

Cursing The Darkness

candle-1421437-639x847“It is better to light a candle than curse the darkness.”

I allowed my candle to be snuffed out last week and spent a few days cursing the darkness.

Social media is a two-edged sword. It allows me to connect with like-minded individuals, transforming what can be a lonely existence with a chronic illness into one filled with support. Strangers become confidants and sometimes even lifelines. Communities blossom, become stronger, make the world a better place with the addition of social media.

It can also suck. Strangers can also become critics, seeking attention through negative attitudes. They prescribe to the idea that they can be wrong at the top of their lungs and someone will listen and believe them. There’s an entire world out there that is fueled by the perpetuation of misperceptions. (Helllooooo…. Crossfit.)

Normally, when faced with an Internet troll, I remind myself that keyboard courage is a real thing. People hid behind a computer and say things they would never say standing in front of that person. These individuals simply are unable to have a civil conversation online. ‘Bow gracefully and step away’, I mumble to myself. ‘You have other things more worthy of your attention.’

I got caught with my computer pants down. Coming off of a few weeks of traveling and intense conversations with people who matter, I was emotionally and physically drained. Out of nowhere, there were a few social media interactions that pushed the boundaries of politeness  went for the jugular about what I was doing, who I thought I was, and my place in the community – from more than one person in the space of a few hours.

Let’s get this straight: I am no angel.

black-and-white-eye-1254497-640x480I am not altruistic; The Diabetes Collective and the Diabetes Patient Advocacy Coalition are passions of mine because I benefit directly from my efforts and the efforts of others. I have been told (by both friends and employers) that I can be condescending, passive-aggressive, abrasive, aggressive, and a few more “you’ve got to work on your ability to work with others.” I run with scissors. I can be quick to anger. I can be an asshole.

Take them all as character flaws and know that I am acutely aware that I am not perfect. (Helloooo… title of my blog?) But… I’m a perfectionist, holding up impossible standards that I will never reach. Diabetes makes anyone with perfectionist tendencies feel like a failure. It’s taken me a long time to get over that.

I am also incredibly sensitive, want to be loved as much I as love others, seek to learn from my mistakes, and extend a hand to help whenever it’s needed. It took me years to laugh at myself or not spiral into anger or sadness when someone picked on me. (I was/am easy pickin’, too. I’m tiny with a weird name.)

Bone weary, drained, thinking intently over the previous few days “where do I belong in this growing community?”, and the tacit confirmation of a friendship lost set me up for a wailing wind that blew through my soul and snuffed the candle I work very hard to keep lit.

Cursing the darkness, I let it be known to my group on friends on Facebook that I had reached my limit of putting myself out there. I was done sharing, done being passionate, done. Just done.

It’s cold in the dark. Quiet. Isolated. It’s not where I like to be and there are moments that I think sharing my story and my life openly on this blog and on social media puts me in danger of having my candles blown out. We’ve all seen the damage that social media can do to one’s psyche. It happens every day.

My beautiful friends, being who they are, responded with soothing words and candles of their own to light the way out of the dark for me. I am grateful to them.

This is why the blog has been quiet as of late. I’ve had to do some much needed introspection and think about how I reacted and how I would react in the future if this happened again, which we all know, social media being what it is, probably will.

I don’t have answers, but thanks to people who know who I am (sometimes better than I do myself), at least I’m not cursing the darkness.

 

 

 

Black Boots, A Whip, and A Tophat: Diabetes Circus

1395333_65756224-2Welcome to my diabetes circus.

I’ll be your master of ceremonies. My top hat, black and shiny and oh so worn, beckons you with a twitch of my wrist to come closer. The show, I promise you, is mesmerizing.

You’ll find plenty of interesting games for you to play on the midway before you enter. Guess The Blood Sugar is one of my most popular, followed closely behind by Why Did Your Blood Sugar Do That When You Did Nothing Different? The booth, Five Years To A Cure, is pretty old, but there are those who still try to win the prize.

Take your seats.

Watch your step as the lights dim and strobes flash. Diabetes likes to make an amazing entrance.

I wield the whip on my hip to keep the nasty blood sugars at bay, watching the arc of my CGM as I crack them into submission.

Like my shiny black boots? They’re my boots of truth. I use them to stomp on those pesky little fallacies about this disease. (They make little sighs and oofs as I grind them into the dirt.) But they know it’s a show, so they come back the next day, sometimes towing new friends.

The clowns in the corner are unpredictable. Sometimes, their antics are hysterical, bringing down the house with laughter and giggles as my blood sugars creep lower. They’ll want you to believe that everything is just hunky-dory. Don’t believe them. Those clowns will turn on you in a hot minute, smearing their greasepaint as they sob uncontrollably and unexpectedly. I don’t pay them anything, but they keep showing up. Can’t get good help these days.

1262184_84252893The jugglers and acrobats show you just how difficult keeping all the things we think about in the air.

My magician act is stupendous, if not a little unoriginal. From thin air, I pull carbohydrate counts and multiple mitigating factors, weaving them into my day while walking on that thin wire above our heads.

The music you hear? Relentless drumming that ebbs and flows in volume, depending on how precarious the act becomes. And you must know… sometimes the show is more dangerous than I let on.

The monkeys chatter from the top of the trapeze artist’s perch, chiding me about past mistakes and future fears, while the dogs on bicycles wearing party hats circle below, distracting me from my goals.

The sweet, wise elephants never let me forget that the show must always go on. 

And it does.

Every day, even when I want to drag the big top to the group, ripping up poles and stakes. There is no rolling into the next town.

I am forever here, in the center of the ring, waiting.