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Posts from the ‘Diabetes and Emotions’ Category

Show Me Your Pump … Or Not.

During a presentation in Duluth, MN last week, I was talking about my family and I used a photo in the slide deck that I’ve used many times before.  It’s one of Birdy, Chris, and I and we’re at some park on a sunny fall day, enjoying the sunshine.

“This is my family.  And right there – RIGHT THERE – is my diabetes.  Can’t miss it.  It’s just THERE and it’s always there.  I love this photo because it shows off my wonderful husband and the daughter I went to the ends of the earth and back for, and I couldn’t be prouder and more in love with my family.  But then there’s that reminder again, the reminder of diabetes and the intrusion it makes into my life.  Like I said, I love this photo.  But I want to Photoshop the hell out of that one part.”

Diabetes has not been a smooth ride for the last few weeks.  Unusual moments like a skunked bottle of insulin and two Dexcom sensors that rolled off my skin way too early, a few low blood sugars that fucked with my happiness a little bit … all stuff that sometimes happens, but lately it feels like it’s always something.

A relentless itchy patch left behind by a Dexcom sensor from weeks ago on my right thigh that, in the middle of the night itches so badly that I scrape at it while I’m sleeping, only to wake up and find blood underneath my fingernails sums up how I’ve felt lately.  (And holy run-on sentence!)  It’s not the actual diabetes moments – the actual low blood sugar, the actual itchy sensor, the actual hour lost to reinforcing to my insurance company that yes, insulin is necessary and should be covered – but the cumulative experience that’s a little more than meh of late.  I’m grateful for access, but having access gives me a perspective that allows for being wildly grumpy at times.  I’m worn out on the self-care crap.  I don’t have any choice but to continue to make the best efforts I can to take care of myself.  Diabetes without self-care becomes chaotic quickly, for me.

There’s no “but,” to that, no caveat.  There’s just a desire to take a sponge and wipe away all the traces of diabetes for just a few hours.

… that, and our coffee pot cracked this morning, so that’s probably not helping my mood.

 

What Influences Blood Sugar? (Hint: Everything.)

“So the food you eat makes your blood sugar go high, right? And the insulin makes it go lower?”

I clearly remember asking this of my certified diabetes educator, way back in the day, as I was trying to make sense of the things that could influence my blood sugar.

It wasn’t until I was a little bit older, with access to different diabetes technologies, that I saw just how many things left their mark on my blood sugar.  This morning, with only emotional stress as an influencer, I watched my blood sugar take the straight road north on my Dexcom graph:

My emotions have their way with my blood sugars all the frigging time.  The math isn’t always repeatable.  Easy morning + healthy breakfast + in-range fasting blood sugar = in range post-breakfast blood sugar.  Stressful morning + diabetes – rational thoughts = rising blood sugar.

Getting the number after the equal sign to remain “in range” takes more work that I’m willing to admit at times.

Guest Post: Diabetes and Our Relationship with Food.

Georgie is a twenty two year old university student and future French teacher living in Melbourne, Australia. She’s had type 1 diabetes since 2010 and has become very talented at hiding her pump in various dance costumes.  She hates her pancreas but loves the DOC, and is in the very slow process of creating an organisation Down Under to help those with type 1 diabetes and eating disorders. 

I feel lucky that I’ve had the opportunity to spend time with Georgie (she is my favorite holiday card buddy), and today I’m very lucky to have Georgie guest posting about disordered eating, diabetes, and the way we view food.

*   *   *

Sometimes I read things while procrastinating on the Internet that strike a chord with me. Usually they are quotes that revolve around cats and wine, but occasionally there is one gem that sticks with me. I read a quote recently while scrolling through Tumblr that read:

“We are prescribing for fat people what we diagnose as disordered eating in thin people.” – Deb Burgard, keynote at the 2011 NAAFA conference.

At first this quote didn’t surprise me – it seemed quite obvious really, I muttered a ‘duh’ and kept scrolling until I hit the funny cat pictures instead. It wasn’t until I was sitting down to my dinner that night, slowly adding up my carbs, and berating myself about my 16.8 (288 mg/dL) that I realised that there was a reason for that. I was identifying with that quote so strongly not because I am morbidly obese and have had doctors make me count my calories, but because I have type 1 diabetes and “disordered eating” is basically my normal.  We are asked to weigh our food, count our food, know everything there is to know about our food, and yet somehow keep a healthy attitude towards what we put in our mouth every day. Some people manage this – but I know a lot of us don’t!

People with type 1 diabetes are set up for a weird relationship with food, no one seems to mind, and it’s driving me crazy.

“You have to see what’s on your plate as numbers!”

“Don’t eat that, that’s bad!”

“What do you mean, you’re not weighing your food?”

We are doubly lucky though – not only do we have healthcare professionals telling us what to eat, we also have the Food Police!

We all know the Food Police. They can be sneaky – they come disguised as your work colleague, your neighbour, or your aunt at a family dinner. They usually come armed with “lots of knowledge” about diabetes, because their third cousin’s grandma had diabetes, and she “DIED because she ate too much cake!!!” It hides under the guise of concern, but mostly it’s a nosy way to exert control over you while claiming that it’s for your own good. At one point I had a member of the Food Police say, “What if I hadn’t been there to tell stop you eating that? Haha!” Oh, I don’t know, I would have eaten this muffin anyway, but without the omnipresent feeling of shame?

The only other group of people that I know whose food choices seem to be up for public comment are obese people – which is why I think the quote above stuck in my head. We are both told to live a life that revolves around counting our food, and people in our life feel the right to comment on whatever is on our plate. Is it any wonder that some of us start to see food as the enemy? The most ridiculous thing about this is that we CAN eat what we want – we are just like anyone else, except our pancreas comes in syringe/pump form. Would you ever look at the food on a twelve year old’s plate and say “There’s way too many carbs on that plate – remember, you’re trying to lose weight”? No? Then why do you feel obliged to say it to a child who happens to have type 1 diabetes?

Food shouldn’t just be a number; food is there to be enjoyed! I look at a piece of bread and I see “15 grams,” but I should also see “I am full of delicious grains to get you through the afternoon” and “Damn, I taste delicious with some avocado.”

Food is not inherently bad or good. Did your donut creep up on you during the night and rip out your pump site while letting out an evil cackle? The only labels food should have is a Post-It saying, “Eat me, I’m delicious.”

Food is food – what you eat does not define your worth as a person, and leading on from that, what you eat, how much you weigh, and what your hba1c is does not define how “good” of a diabetic you are. We HAVE to stop looking at our A1Cs, our weight, our food choices, and our insulin dosage as something that we can measure and evaluate ourselves against.

How is that healthy? Disordered eating doesn’t necessarily mean an eating disorder, it means eating in a way that could or does harm you physically or psychologically,  and I’m pretty damn sure that some of the practices that healthcare professionals are advocating do not create healthy and balanced attitudes towards food.

When I was volunteering on a kids’ diabetes camp last year, a twelve year old girl was sitting next to me at supper and wouldn’t eat her cookie.

“Why honey? The dieticians told you the carbs, right?”

“Yeah … but Mum won’t let me eat stuff like this at home, she says it’s bad.”

“Food isn’t bad or good, food keeps us going and it’s delicious – don’t you like it?”

“Yeah I do, but … Mum would be so angry – is there an apple or something instead? I can’t eat bad foods.”

My heart nearly broke – this girl, already under pressure from society to look a certain way, can’t bring herself to eat a cookie because her Mum, and no doubt her healthcare team, has told her that foods are ‘bad’ and ‘good.’

I appreciate that it’s a very fine line for carers and healthcare professionals, between keeping their patient healthy and not causing them to hate everything they put in their mouth – but food is not the enemy.  Food is not something we should judge ourselves by – we have to stand up for ourselves. Don’t let the fact that we’re acutely aware of what we’re putting in our mouths affect our enjoyment and love of food.

Food is not the enemy, our pancreases are!

*   *   *

You Are HERE.

Why are you here?  Why do you read diabetes blogs?  What made you want to start a Twitter account and participate in diabetes chats?  What makes you want to attend diabetes conferences?  What inspires you to organize meet-ups with local PWDs or advocacy walk teams?  How come you read diabetes articles and news sites and magazines? Why do you want to connect with others who have diabetes?

Why are you HERE?

I’m here because I have diabetes.  My impetus for starting a diabetes blog was because I didn’t know anyone else “in real life” who lived with type 1 diabetes and that feeling of isolation was starting to gnaw at me as much as my fluctuating blood sugars.  Back in 2005, there weren’t a lot of people sharing their stories, so I connected fiercely with the few who were.  (And if you’re wondering, I do still talk with Dee, and Violet.  I miss Tek and haven’t heard from her in ages.)

Before the diabetes online community was a “thing,” I felt like the only diabetic in the universe.  It felt good to be proven wrong, over and over and over again.

I started this site because I wanted to find some kindred spirits.  And that’s the reason I continue to write, and to try and connect.  It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier.  Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.

It’s a personal preference thing, and that’s my personal preference.

There are people who understand what you’re going through.  That’s the whole entire point of the Diabetes Online Community, to give us that “me, too!” moment that helps make diabetes suck less.  You are not the only person living with diabetes, or caring for someone with diabetes.  You are not alone.   The point is not pageviews or advertisements or conferences or “perks.”  If that’s why you’re here, I wish you all the best, but that’s not why this community started, or why it continues.

There’s no “how to” list when it comes to engagement.  You just have to DO.  Do it.  Engage.  And just as with diabetes (or with life in general), it’s important to manage expectations.  Give yourself time to find that kindred spirit, those PWD peers.  Feeling connected is not as simple as logging on, but becoming part of the discussion, however big or small.  Please remember that your voice is important, and it doesn’t matter how many people are “reached.”

The point is connecting with your own, personal community and you are at the very center of that experience.  It’s about you being reached.  It’s about you.  YOU.

Diabetes Relics: Accu-Chek II.

Whose pockets were what size now?

[here's a link to a full size photo]

Scanned from the pages of the Fall 1986 issue of “Diabetes Forecast: The newsletter for people who live with diabetes,” this was my first glucose meter.

Next week marks 28 years with type 1 diabetes for me, and looking back at the technology I used upon diagnosis, I see how far things have come.  I wonder if I’ll look back, decades from now, and marvel at the cumbersome technology of 2014.

Maybe I’ll be all making my own insulin and tending to a big, fat glass of Reisling and not giving a shit because research will have finally caught up with hope.

A Human’s Resilient, One Hundred Percent!

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
“But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

 

BOLUS: Beware Of Loose, Unsupervised Snacks.

I graze.  I’m a grazer.  Visually speaking, my food choices are spread out over a gigantic field and I run through, grabbing bites here and there and never properly taking amounts or serving sizes into account.

“How many grapes did I just eat,” is a common, whispered question.  “Did I bolus for that protein bar?” is another one.  “Hey, I only had eggs and not toast – how many carbs did I bolus for, and what needs to be consumed now so I don’t hit the deck?”

I am good at going through the motions of diabetes management, but I have been slacking on minding the minutiae of late.  I don’t sit down to formal meals throughout the day (schedules are nonexistent at the moment), so keeping track of the food I’m eating has been a challenge.  Grazing makes for dodgy carb counting.

I need to mind my B.O.L.U.S:

Must Beware of Loose, Unsupervised Snacks!  When carbs are roaming around unsupervised and unbolused-for (terrible grammar, worse when spellcheck changes it to “unbloused-for”), blood sugars go high and stay there because I’m chasing my insulin-tail or I go low because I’m over-estimating.  Insulin is potent stuff, and SWAG’ing it makes for Ms and Ws on my Dexcom graph.  If I can just pay-the-fuck-attention to what I’m eating, I’ll have fewer frustrating results.  Right? RIGHT??

The more I mind what I’m eating, the more even my blood sugars will be.

Now let’s see how that theory shakes out, as I attempt it for the 10,000th time since diagnosis.

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