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Posts from the ‘Real Life Diabetes’ Category

When Good Insulin Goes BAD.

Ninety percent of the time, my high blood sugar has an identifiable reason, and there’s a cluster of common causes.  Did I under-estimate the carbs in a snack and therefore under-bolus?  Did I over-treat a low blood sugar?  Did I eat without bolusing at all (it happens)?  Is there a lot of stress floating around that I’m responding to?

Most of the time, those questions cover the why.  Once in a while, my highs are for rogue reasons, like an air bubble in my pump tubing.  Or when I eat something carb-heavy right after an insulin pump site change (it’s like that first bolus doesn’t “catch” somehow).  Or I forgot to reconnect my pump.  Or if the cat bites through my pump tubing.

But rarely, if ever, is one of my high blood sugars the result of bad insulin.

Except it totally happened last week, when two days of bullshit high numbers had me mitigating every possible variable … other than swapping out the insulin itself.  (And clearly I’m stubborn and/or in denial about the quality of my insulin’s influence on my blood sugars?)  I rage-bolused.  I exercised.  I low-carbed the eff out of an entire day.  I did a site change at midnight to take a bite out of the highs.  Nothing.  The downward-sloping arrow on my Dexcom graph had gone on hiatus.

(Always a punched-in-the-gut feeling to see the word HIGH on a Dexcom graph, accompanied by an up arrow.)

But ditching the bottle of insulin entirely and swapping in a new Humalog vial?  That did the trick in a big way.  For once, it was the insulin.  Next time, it will surely be the cat.

LOW.

BEEP!BEEP!BEEP! from the Dexcom receiver on the bedside table.

I heard it beeping for a long time.

Woke up with sweat pouring off my forehead and running down the side of my face, pooling up in my ears and in my collarbone.  The pillow was soaked.  My hair was soaked.  An outline of me underneath me, the line drawn with the panicked sweat of hypoglycemia.

Panic.  But tempered panic, since I was so deep into the low that I was slow in recognizing anything.  My status updated slowly:  This is a low.  This is a bad, bad low.  Eat something in a hurry or you’ll probably die.

The juice box on the bedside table was hard to assemble.  Plastic sleeve around the straw, poking the straw through the foil hole … all actions I’ve done before but it took 30 seconds apiece for me to figure out how the whole thing worked.  I drank the juice as fast as I could, in just a gulp or two and then I settled back into my self-made sweat lodge.

A few minutes later – maybe two, maybe twenty – Birdy arrived fresh from a nightmare, clutching her blanket and asking to sleep in our bed because she was scared.  I don’t remember gathering her up, but I do remember putting her on the outskirts of my dampness, snuggling her up against her still-sleeping father.  I was scared, too, still arranging blankets, trying to find a cool, dry section.  I looked at the Dexcom, and it only told me I was LOW and had been LOW for a long time.

Normally, I get up and brush my teeth after a low blood sugar.  Sometimes I use the hairdryer to dry my hypo-damped hair.  This time, I couldn’t move my ankles without feeling the dizziness flooding up to my hairline.  I used the edge of my t-shirt to mop the sweat from my ears.  So gross.  But necessary.

This morning I woke up chilled to the bone, the result of falling back asleep soaked to the skin and then drying off in the cool, fall night.  The Dexcom told me I had risen up safely to 109 mg/dL, and my meter confirmed that result.  My family bounced up and was ready to start their day, and I followed behind them, nursing the hypoglycemic hangover, grateful for technology that woke me up and for portion-controlled hypo treatment, but pretty fucking pissed off that diabetes was the nightmare last night.

 

What Does the DOC Mean to You?

Two weeks ago, the #dsma chat was centered on the how and why of people’s participation in the Diabetes Online Community (DOC), and after chat participants shared what brought them to the web for diabetes information, the last question of the night asked them what the DOC means to them.

The answers created a quilt of community and comfort that can’t be denied:

And for me?

Tune in to tonight’s #dsma chat at 9 pm EST. For information on how to get started with Twitter, jump back to this Diabetes and Twitter 101 post.

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.

Best Intentions Need to Stick.

Yesterday, my bag was packed with all kinds of good intentions.  My CGM sensor was only three day old, on a bright and shiny Toughpad to prevent adhesive rash!  The Dexcom receiver was fully charged!  My CGM in the Cloud rig was all charged up and ready to send my data into the cloud so that I would have a safety net while traveling to Washington, DC for the night.  Extra test strips and a fully charged Verio Sync meter?  I’M ON IT.  My wallet even had a few slips of Opsite Flexifix tape cut into band-aid sized strips and wedged into the change purse, ready to help hold down a wilting sensor.

Much best!  So intentioned!

… which did me zero good when I arrived in DC and my receiver threw a SENSOR FAILED error message after I went to the gym, forcing me to reboot before dinner.  Which meant I went to dinner without a CGM graph, which made me feel like I was sort of flying blind, but then I realized I left my glucose meter in my hotel room so I was actually flying blind without any way to check my blood sugar or calibrate my CGM during the meal.

… and then, sometime during the night, the sensor came loose and fell off my thigh.

All these good intentions? They need to STICK.

Seeking PWD Peers.

Two weeks ago, I was in Vienna for the third annual European Animas Blogger Summit.  (I’m a blogger, and I have a working relationship with Animas.  Only missing the European part, and I can’t even pretend because I was once told that my attempt at a British accent was akin to Dick Van Dyke’s Mary Poppins attempt.  So, no.)  Other folks who were in attendance have written about their impressions and take-aways, but the discussions we had can’t be concisely covered in a blog post.  It would take several blog posts.

So, in keeping with that theme, this blog post is centered around one of the discussions that embedded itself into my head:  connecting with PWD who are living with type 2 diabetes.

It started with a conversation about the #walkwithd campaign.

“The Walk with D campaign is about showing people what diabetes is really like, peeling back the stigma and reinstating dignity.  We do this already through blogs and Twitter and Facebook updates and all of the photos we share with our community and society as a whole.  The hashtag is simply a way to link some of these discussions, and to share more.  But, in looking around the room, I see a lot of kindred spirits who are dealing with type 1 diabetes.  Where are the type 2 voices?”

I don’t know much at all about life with type 2 diabetes. Sure, I can look it up on dLife or WebMD or some other resource that gives a high-level definition of type 2 diabetes, but that doesn’t give me a sense of what it’s actually like to live with type 2 diabetes.

My lack of perspective used to be rooted in straight up ignorance.  Diagnosed with type 1 diabetes as a child, I actively sought to separate myself from my type 2 peers because I didn’t want people thinking “I did this to myself.”  And I have to put that statement in quotes because it’s such a crummy one, now that I know so much more about the differences and similarities between all types of diabetes.

It’s difficult to talk about how I felt when people lumped type 1 and type 2 together.  I’m embarrassed to admit these things.  The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier.  I wish I had been more supportive of my type 2 peers.  I wish I had known how they felt.

And that’s the part I truly want to better understand.  How does it FEEL to live with type 2?

Rachel at Refreshing D was one of the first people who had type 2 diabetes who I really got to know.  Through her columns at dLife, her blog, and through becoming friends, I had a reliable window into life with type 2 diabetes.  I don’t know if I can properly articulate how much she has taught me, or thank her for being brave enough to share her story.  With Rachel as my gateway to understanding type 2 diabetes, I connected to and learned from people like Travis, Sue, Kate, and Bob.  People who live with diabetes – just not the type I’m familiar with – but who I need to better understand in order to best understand this community.

“I wish more people with type 2 would raise their voices.  How can we encourage them to?  How can we empower them to?”

The discussion during the blogger summit was frustrating in that none of us had a clear answer, but we realized that the responsibility for creating an empowering and inviting environment was on the DOC, both globally and in our respective countries.  We, as people with type 1 diabetes, are smaller in number in society but we tend to dominate the Diabetes Online Community, and I think it’s up to us to help pave the way for people with type 2 diabetes to feel comfortable coming out of their diabetes cave and sharing their perspectives.  Stigma runs rampant regarding diabetes, but we can help change it from the inside by getting to know our peers.  Finding what unites us can help us better understand one another as people and can help us all feel like we’re part of a community that has our back.

If you’re living with type 2 diabetes and you’re reading this post, please share your journey.

I walk with diabetes, but I don’t walk alone.  And neither do you.

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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