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Posts from the ‘Diabetes and Emotions’ Category

Let Loose.

(Is it okay to let loose with a stream of consciousness sort of thing today?  I hope so.  My mind isn’t capable of anything else at the moment.)

I’ve been thinking quite a bit about the diabetes community.  So much has changed since the Internet started to populate with patient stories.  I don’t mean that in a “oh, the industry!” sort of sense, but more that the concept of “I am not alone with diabetes” has gone from hopeful to factual over the last decade.  I love the diabetes community.  After such a long gap between camp and finding online support, I appreciate the friendships – real and true – I’ve forged over the last decade.  To go full Jerry McGuire on the whole mess, they complete me.  I even appreciate the people I find prickly to a certain extent, because my interactions with people I don’t get along with help me grow as a person.

My feelings about the community are a weird contrast against diabetes itself, because the disease is not something I love.  I don’t appreciate it.  I don’t view it as a gift.  I view it as a disease.  So it’s a strange hybrid feeling to be so taken with a group of people anchored around a disease I would give back in a heartbeat.

(Oh hell yes, I’m in that kind of hug-everything mood today.  Wait until I cut-and-paste blooming violets and rainbows and doughnut rain up in this blog post.  It’s a combination of jet lag and hypoglycemia.)

By contrast, I haven’t wanted to share so much online these days.  I thought I was hitting a pocket of diabetes burnout a few weeks ago, but then I realized my blood sugars were fine.  I was checking my blood sugar at the necessary times.  I was wearing my devices and doing whatever was necessary to keep them, and me, up and running.  It’s a comfortable diabetes apathy that I’ve settled into, with results that are in range enough and diabetes control that falls within the guidelines well enough.  But I’ve wanted to shut the computer more and more lately.  Maybe it’s not diabetes but social media burnout?

Over the last few weeks, my life has been busy in ways that have nothing to do with diabetes.  I’ve been outside logging miles on the running trails, as this is my favorite time of year to run outside.  I have a new, comfortable routine of waking up before the rest of my family and making a pot of coffee, then reading blogs and emails while single-handedly killing the pot of coffee.  (Which means, by the time everyone else wakes up, I’m completely lit.)  We moved to a new town, I’ve been on the road for work, I’ve been investing myself in friendships and family, and I’m trying to spend more time talking to people I love instead of Tweeting into the abyss.  I made a conscious decision to pull back from the Internet and rethink how I felt about advocacy, especially in the wake of, for me, a less-than-fulfilling Diabetes Month.

And then yesterday I spent the day with the P4DC team and this welcomed wave of re-invigoration washed over me.  The conversations were diverse, but did close with a brainstorming session about Spare A Rose, which reminded me that the DOC isn’t about sharing thoughts and feelings without recognizing how frigging lucky we are.  We are lucky.  I feel like we found our footing, as an online community, by connecting with one another and comparing our good moments with our tougher moments, talking about our general lifestyle stuff and we got really comfortable in that space.  And then we started to realize, after connecting with our fellow and privileged peers (because if you’re reading this on a glowing screen, you’re luckier than most), that we live in a bubble of sorts.  We have nice problems to be managing, all things considered.  I think we came to realize that, as a community, and our ambitions and outreach started to step outside of serving ourselves.  Greater good sort of stuff.

That inspires the absolute hell out of me.  Changing our world takes a lot of effort and dedication and determination but good heavens, we can do this.  I am going through the ebb and flow of life and diabetes and all that comes with continuing to move forward but when I look at this community and see what we’ve done, and then consider what we’re capable of, the advocate in me rises from the ashes of burnout.  Like a phoenix.  (Or, probably  more realistically, a groundhog.)

Whether furry or on fire, my desire to be part of this vibrant community remains intact, intense, and appreciative.

Birdy the Kid and Jerry the Bear.

“Jerry has diabetes, like you do, mom.  So I give him food and insulin and check his blood sugar and he likes to play archery.”

A brief pause as Birdy rand her hands over Jerry’s soft bear ears.

“Mom, what’s archery?”


A photo posted by Kerri Sparling (@sixuntilme) on

[Disclosure:  Jerry was a gift from Hannah to Birdy.  We did not purchase Jerry.]

Yesterday, Hannah Chung from Sproutel kindly visited Birdzone and I to drop off a new friend for my daughter:  Jerry the Bear.  Jerry is a stuffed animal bear who has type 1 diabetes, and part of snuggling him and playing with him can also include checking his blood sugar by pressing a button on his paw.  Developed to help kids make sense of their own diabetes diagnosis, Jerry helps normalize diabetes by being a kindred spirit who also needs insulin and glucose tabs. 

He’s a stuffed animal who happens to have diabetes.  Similar to how I’m a mom who happens to have diabetes.

And that’s exactly how I want my daughter to learn about life with diabetes, with the constant, comfortable caveat that diabetes provides a to-do list, but it can be done.  And it can be fun.

Birdy knows quite a bit about diabetes, but mostly the brass tacks sort of stuff.  She likes to press the button on my lancing device (though she’s always surprised when a drop of blood comes out – “Does that hurt, Mom?”  “No, kiddo.”  “Are you sure?  Because I see blood.”), she prides herself on selecting the spot for my insulin pump infusion set, and she has a solid grasp on the meaning of the sounds ringing out from my Dexcom.

What she and I have not discussed, however, is what so many of the numbers mean.  She knows that my glucose meter gives me numbers of some kind and that I respond to them with certain sets of actions, but the numbers aren’t in context.  165 means the same at 50 means the same as 433 … nothing.  They are just numbers, or at least they were, until yesterday.  Yesterday, through her interactions with Jerry, Birdy learned what “high” and “low” look like as glucose numbers.

“Jerry is high.  See?  His number is one-seven-six.  He has to pee.  I need to give him some water and some insulin,” she said to me yesterday and she and Jerry were coloring at the kitchen table.

“Oh yeah?  So what will you do, then?”

“Mom, I already said I will give him insulin.  And some water.  I know what I’m doing.”

“Okay then,” and I turned away so she couldn’t see me smirking.

Later in the afternoon, she asked me how many glucose tabs she needed to give to Jerry if his blood sugar was low.

“How many do I usually take?” I asked her.

“You stack them up on the counter.  You take four.  Is four right, mom?”

(And this is where she teaches me something  – I do stack up the glucose tabs on the counter before I eat them.  I take out a set number and make sure I eat precisely what I take out, to help avoid over-treating and to also help protect me from forgetting to eat enough in the flurry of a hypoglycemic episode.)

“Yes, four should do it.”

“Okay.”  She “feeds” Jerry four glucose tabs and checks his blood sugar.  “Oh, I fixed it.  He’s not low anymore.”  She smiles, satisfied.  “Hey, do you know that if I smush his fur down and draw my finger through it, I can make eyebrows for Jerry?”

I want her to continue to draw eyebrows on Jerry.  Just because his little stuffed pancreas doesn’t splutter the way it should doesn’t mean he should have weak eyebrow game, yeah?

As she learns, I want her to feel safe and feel protected, empowered to ask and to help.  Resources like Jerry aren’t just for kids with diabetes, but for kids touched by diabetes on all levels.  I want my daughter to learn about my diabetes absent discussions about complications, fear, and pity.  I want her to see type 1 diabetes in the context of my actual life, which is filled with joy and chaos unrelated to my health.  She should know about this health condition because it’s part of what I do every day, and part of what she does, too, after a fashion.

Because it’s not about diabetes; it’s about life.

#DayOfDiabetes Went a Little Rogue on Me.

I started the day strong, but after hours of a frustrating high blood sugar and seemingly bolusing saline instead of insulin (but it was insulin – I checked), I hit a big NOPE when it came to documenting the end of my #dayofdiabetes. I didn’t want to keep documenting my frustrations, not because I was ashamed of them, but because I was FRUSTRATED, you know?

Even though there isn’t a hashtag for my day today, I’m still here. I’m still doing this diabetes thing. And despite some frustrations, I remain fine.

Chronicle. (See also: #dayofdiabetes)

(Chronicle was a movie from a few years ago that I actually liked very much, even though it god a little crazypants towards the end.  Still, a quality film, IMO.)

But today’s post is not about that movie.  It’s about chronicling a day with a chronic condition.  For Diabetes Awareness Month, I’m taking diabetes awareness to task by documenting the daily duties of life with type 1, from site changes to emotional responses to blood sugar numbers … and all the non-diabetes-yet-still-diabetes crap in between.  A big advocacy “thank you!” to Chris Snider’s #dayofdiabetes campaign, and I think November is a perfect time to pop the bubble of diabetes awareness.  People living with diabetes know what diabetes is like.  Let’s show people who might not understand what a day in the life truly means.

Join in on Twitter using the hashtag #dayofdiabetes and share what strikes you about life with diabetes.  Then share that hashtag with your non-diabetes friends, family, coworkers, and Internet connections because Diabetes Awareness Month should be about educating outside of the DOC (Diabetes Online Community).

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.

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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!

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