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Posts from the ‘Diabetes Memories’ Category

Lies.

I used to lie to my pediatric endocrinologist.  (Not proud of this.)

She’d sit at her desk and look through the logbook with all my blood sugars mapped out (this was back in the day when my mom and I collaborated on logging my blood sugars, which meant that they were often accounted for), sometimes with a furrowed brow.

“So there are a lot of higher numbers in the morning, after breakfast.  Do you think we need to look at that morning insulin:carb ratio?  Maybe that needs some tweaking, to help with these post-breakfast numbers.”

There was a good, full year (or two) when I was a teenager wherein I would meet with my pediatric endocrinologist and have these strong, intelligent conversations about blood sugars and ratios and numbers.  She and I would crunch numbers and make changes, all in pursuit of lowering my A1C (which, as a teenager, swung wildly).  I talked the talk.  I sounded like a gave a shit.

But in reality, I was lying to my excellent doctor.  I was wasting her time.

I would show up for my appointments in full-swing teenage diabetes rebellion, knowing exactly why my post-breakfast numbers were such shit but still not able to admit to my endocrinologist that the reason my blood sugars were high after breakfast was because I was too lazy/disinterested/foolish teenager to properly count my carbs.  I was a very privileged teenager in that I had access to excellent diabetes care at the Joslin Clinic, a stash of insulin and glucose meter test strips in my bathroom closet at home, and a family that was both interested in and dedicated to my health and well-being.

So why the hell was I lying to my endo?  Why was I fifteen years old, talking with my kind endocrinologist about numbers that looked dodgy on paper but weren’t entirely riddles wrapped in mysteries – these numbers were the product of actively distancing myself from the responsibility of diabetes self-care.  The answer was clear – the insulin:carb ratios were probably fine and I was just SWAG-bolusing – so why wasn’t I fessing up and saving my endo the effort of trying to find “a solution?”

Yesterday, I was in Minneapolis, Minnesota giving a keynote presentation at the Annual ICSI Colloquium on Health Care Transformation and part of my talk was about how – and why – patients sometimes lie to their doctors.  Like when I lied to my peds endocrinologist about my post-breakfast blood sugars, or how I’ve also lied about how much regular exercise I was getting throughout the course of a week. (“Exercising every day?  Yes!  With bells on!  Um … weighted bells!”)

These lies aren’t told to in efforts to be malicious, but more because it’s hard to admit failure, especially to people I respect.  It’s also hard to admit it to myself.  I liked my pediatric endocrinologist very, very much and I didn’t want her to think my lack of diabetes follow-through, at times, was because I was a bad person.  It was hard to explain to her how much I wanted her to like working with me, and to be proud of me, as part of our patient-HCP relationship.  It was hard to explain why I ignored the daily duties of diabetes sometimes, even though I didn’t want to ignore them.  It just didn’t make sense.  A lot of the time, I didn’t want her to think I was a jerk, like I was wasting her time or something (even though the lies did waste her time – it was a vicious cycle).

“The reason it’s easier to be honest with my endocrinologist now is because she views my pancreas as non-compliant, not me.” I told the ICSI group.  “As a patient, I didn’t want to disappoint my doctor.  It took a long time to realize that the lies didn’t help improve my health.” (More on the emotions behind diabetes and the word “compliance” here.)

Embracing honesty with my current endo has been difficult, but necessary.  I’m able to tell her when I’m going through diabetes burnout, or when I’m skimping on different aspects of my self-care.  It took a long time to make me feel as though honesty was the best policy because it actually enabled my doctor and I to address the things I needed help with, instead of pretending that everything was fine.  I wish I had been as forthcoming with my pediatric endo as I am with my adult endo, but it’s still hard, even now, to look her in the eye and admit the stupid mistakes I make.  Maybe that’s part of the “growing up with diabetes” education curve, learning that I can’t aim to fix what I won’t acknowledge.

I have a feeling that learning curve goes on forever.

Looking Back: Kitty.

I don’t know if I have a spirit animal, but my diabetes does, and it’s Kitty.  Kitty is a ragged and rumpled stuffed animal who kept me company as I navigated my first few weeks of life with type 1 diabetes … and he still lives in the laundry room of my house now (safe, warm, and occasionally snuggled).  He’s my old-school diabetes support.  Today, as I’m traveling to Washington, DC for the Diabetes Sisters weekend conference, I’m looking back at when Kitty came into my life, and how he made me feel safe.

*   *   *

They told me I had to go into the hospital for a few weeks.  I wasn’t exactly sure what “diabetes” meant, but I knew it must involve vampires, because people were drawing my blood every few hours.

“You can pick any friend you’d like to bring with you to the hospital.  Any one you want.”

My father held my hand as we walked into Ray Willis’ Toy Store and I looked at the rows and rows of cuddly and soft stuffed animals.  My seven year old shoes clicked against the tiled floor as I examined the fare.

The soft ears of a gray elephant looked so nice.  I could picture myself hiding behind them if I was scared.  I saw an amber-eyed puppy dog with a pokey little nose.  He looked like he could be my friend.

Then I saw it.My beloved Kitty.

Kitty.

A huggable, marmalade-colored stuffed animal cat with bright eyes and a long, fluffy tail.  He was sandwiched between a giraffe with the tongue sticking out and a stuffed octopus (can’t figure out why anyone would make one of those).

I reached out with my little hands and grabbed him from the shelf.

“This one?  Is this one okay?”

My father gave me the thumbs up.  “That one looks good to me.”

Mom and Dad paid for Kitty and we started our drive up to the hospital for my overnight stay.  Originally named “Tigger” but eventually falling victim to a less imaginative moniker of “Kitty,” I kept this stuffed animal at my side for every blood test and doctor visit.  He was a loyal friend and received the occasional shot, too, when I wasn’t feeling brave enough to be the only one being injected.

I used to wag his tail and make him wiggle about, trying to convince people in the hospital elevators that he was real.

A boy on the bus in second grade tried to pull Kitty’s arm off and gave him a good rip.  I cried to my mother, who was about to sew up the wound with orange thread, that she needed to use black thread so it would look like a stitch and I would know he was better.  Ever-obliging, my mother stitched Kitty up and I admired his war wound with fascination.

Siah is not a fan.

Twenty years later and no longer the newly diagnosed little girl at the toy store, I’ve had this Kitty with me through it all.  He used to look vibrant and fluffy, but now his fur is matted and mangy.  He lived on my bed in college.  He moved to my first apartment with me after college.  Even when I felt “too grown up” to have a stuffed animal on display in my house, Kitty has managed to weasel his way into a bookcase or a closet shelf.  Currently, he lives on top of my winter sweaters in my closet, looking at me with his matted fur and sad eyes from the mountain of wool and cotton.

He made me feel comforted.  Admittedly, he still does.

He’s a testament to how long it’s been.  And how far I’ve come.

(But Siah doesn’t like him too much.)

*   *   *

Looking Back: Lows in Public.

On the road this week, so I’m looking back at a post from June 2012 about experiencing hypoglycemia in a public place.  It’s never fun to be low, but I’m always grateful for the patience and compassion of others who help see me back to being in-range.

*   *   *

I heard the Dexcom BEEEEEEP!ing in that frantic, “you’re low” kind of tone and my brain was swimming with confusion, so I went to the bar at the dinner event and asked for an orange juice.

“Do you want vodka in that, as well?”

“No, definitely no thank you.  Just juice, please.”

The bartender filled up a small tumbler with orange juice and I downed the contents of the glass in one giant gulp.

“Thanks,” I said, and wandered off, fishing my meter from my bag to get a true assessment of how far down the rabbit hole I’d fallen.

There isn’t ever a convenient time for a low.  I suppose the ones that happen when I’m at home and are only in the 60 mg/dL range and can be treated with the logical and tempered rationing of glucose tabs are better than the ones that happen in public.  When you’re at a dinner event and you’re trying to meet people and make a favorable (or at the very least, coherent) impression, it’s not the most opportune time for a 38 mg/dL to make an appearance.

Once I saw the number on the meter, I became this strange, hypoglycemic bear, foraging for food and ready to growl at anyone in my way.  The very nice waiter who was bringing appetizers around to the attendees ended up with an empty plate after I had my way with him.  (Which sounds worse than it actually was; he only had three snacks left, but I snagged them and might have bared my teeth at him in the process.)  My low symptoms were peaking, with tears in my eyes and confusion on my tongue and every skin cell buzzing with panic and adrenaline.

I do not like being low in front of people.  I don’t like that momentary weakness and the vulnerability and that empty, lost look I’ve been told takes over my eyes.  I don’t like that lack of control.  I don’t like when my knees buckle while I trying to keep myself upright.  I don’t like the look of “Are you okay?” that comes over the faces of most people, because it’s one of the very few times I have to answer, “No, I’m not.”

Thankfully, I was at a diabetes-related event, surrounded by people who either had diabetes, cared for someone with diabetes, or worked to cure diabetes.  So when I casually mentioned to Jeff Hitchcock that my blood sugar was tanking and I didn’t know what was going on, I was ushered quickly and covertly to a seat at a nearby dinner table so I could make sense of things.

“I’m fine, you know.  I had juice.  I’ll be fine in just a few minutes,” I said, folding and refolding the napkin on the table while I waited for my blood sugar to respond to the juice.

“I know,” he said, his voice calm and reasoned.  “We’ll wait.”

As it always does, the panic subsided.  My blood sugar came back up into range (and went up just a bit more than it needed to, thanks to downing that whole glass of orange juice).  And I was able to rejoin the dinner conversation without needing a three-minute lapse between thoughts, thankful for people who “know.”

Plastic Apples and Measuring Cups.

Her desk was anchored on either side by tall bookshelves crammed with pretend food.  Plastic fruit – apples, bananas, oranges, kiwis that looked like fuzzy dumplings – and the cardboard shell of cereal boxes.  Plastic slabs of steak with edging to make it look like it had a pat of butter melting on top, and the entire plastic carcass of a chicken, woefully untrue to size, making it the same size as one of the kiwi dumplings. Measuring cups and food scales, lists and charts, meal plans and index cards covered with suggested serving sizes.

It always felt embarrassing, seeing the nutritionist and the dieticians, especially when I was in my teens.  I struggled with my weight as a kid but didn’t ever dip into “overweight,” just more settled on the heavier end of the approved spectrum.  I hated meal plans and the emotional influence of food on my life.  Visiting the plastic food lady as part of the flow every few endocrinologist appointments felt shameful, and I wondered what my classmates would think if they knew I was lectured about eating and food every few months.  Would they know how complicated my relationship with food really was?  Dietician appointments felt like mini-fat camps, and even though I did feel better-informed leaving the appointments, I still felt stupid and ashamed that there were required in the first place.

Moving forward a few decades, diabetes is still very much in play.  I don’t see a dietician as often now as I did when I was growing up, but I do attend a lot of diabetes conferences where registered nurses, dieticians, and nurse educators present, giving me access to refresher courses on food, eating well, and the latest in food and diabetes research. The plastic food is still in play, only the plastics aren’t relegated to my CDE’s bookcases anymore.  Now, the plastics are invading my home.  My daughter’s room is awash with kitchen playthings and miniature versions of what my dietician used as visual aids back in the day.  We talk quite a bit about food and why we eat the things we do.  I try not to let my food-through-the-lens-of-diabetes mindset invade how she sees her plate, even though it’s hard, since we spend so much time together and she sees so much of my diabetes day-to-day management (attempts).

“We need to eat healthy foods so we can grow to be strong and smart and healthy,” I tell her.  “Yeah, and we always need to eat something green with our meals,” she adds, knowingly.  “And sometimes we have juice in the fridge, but it’s for your low blood sugars.”

I don’t want my daughter to think that there are so many food “rules.”  I want her to eat things that make her feel good and that taste good, without looking at her plate and thinking her value as a person rests there.

In her room, she ‘cooks’ up a storm, throwing random items into the plastic stock pot on her pretend stove.  “We need an eggplant, and a hard boiled eggie, and some ash … ash … ASHparagust, and Wonder Woman,” with all of the aforementioned tossed into the “boiling” water.

“What are you cooking, Birdzone?”

“I’m making soup. It will be so delicious. When I’m done, you can have a bowl.”

“What’s in it?”

“Don’t worry, Mommy.  There’s something green in there.  There’s ashparagust.”

March is National Nutrition Month (more about that on the Academy of Nutrition and Dietetics website), and this year’s campaign encourages people to “Enjoy the taste of eating right.”  The phrasing of that message is so hopeful, and without residual shame:  enjoy.  Enjoy the taste of eating right, whatever “right” might be for you.Yes!  I’d like to!  I’ll do that!

My hope is to eventually shake the preposition off “eating with diabetes” and just focus on “eating.”

Throwback Thursday: Before Diabetes.

Taken on my fourth birthday, this was before insulin injections. Before blood sugar checks. Before diabetes camp. Before counting carbs and insulin pumps and continuous glucose monitors and before A1Cs and endocrinologists.

… but not before my love of books, and of reading.  I can’t think of anything that predates that.

Looking Back: Telling Off the Paramedics.

A few things: 

This post is almost ten years old, which is unsettling on its own accord.

It also documents the only time in my 27 years with type 1 diabetes that paramedics needed to be brought in to assist, and mostly because my roommate needed help getting me to eat, not because I was unconscious.

I miss Abby and her magical, glucose-sniffing powers.

The day after this low blood sugar happened, I drove to the fire station and thanked the paramedics profusely for their help, and apologized just as profusely for my actions. They said they see it all the time. The fact that they see it all the time and continue to do what they do to help people makes me respect their profession, and all HCPs, even more.

Apologies for the language used. As you know, I wouldn’t swear unless I was low.

*   *   *

Abby. My cat.

She has never missed a low blood sugar. There have been times when I was so low that beads of sweat collected on my forehead, making my face clammy and my t-shirt damp with panic. Usually my body wakes itself up in time, leaving me just enough energy to stumble out to the kitchen and pour a glass of juice. But sometimes I don’t wake myself up.

That’s where Abby has never failed me.

She will sit on the pillow above my head, wailing like a banshee. “Meow!” She paws fiercely at my head and nudges my face with hers. I usually come around as she is pressing her nose fervently into my ear. “Me-ow!” More insistently now. She won’t stop wailing until I am trudging through the living room towards the kitchen. Siah hasn’t figured out this trick yet. But I’m sure she will in time. Or maybe Abby is just in tune with the way my body starts to panic.

Sometimes I feel waves. The ones that gently undulate and lap at the shores of my consciousness. I focus what is left of my resolve on remaining awake, waiting for the juice to take effect. Those are the worst ones. The ones where I am afraid I am going to pass out.

I’ve never passed out. In almost two decades of diabetes, I have never been unconscious. Of course it may happen. It could happen to any of us. But I have come close.

There have been some tricky lows, though.

There was one that I had in January of 2003, while I was living with my ex-boyfriend. The alarm clock went off in the morning, but I didn’t stir. He got up to turn it off. Usually I lean right over and grab my kit off the nightstand so I can test my blood sugar, but that morning I wasn’t moving at all. He had dated me for six years and he knew the signs of a serious hypoglycemic episode, so he immediately woke up and tested me himself. My bloodsugar clocked in at 44 mg/dl. He went downstairs and grabbed a glass of juice.

“Kerri, get up. Drink this. You’re low.”

Nothing from me.

“Hey. Drink this.”

Most often, I sit up, obligingly grab the glass, consume the contents with graceless gulping, and fall back upon the pillow until the tides of my sugar rise enough for me to sit up and say, “How low was I?” This time, I took the glass from his hand, told him to leave me alone, and proceeded to pour the juice all over the bed.

I’m known for being slightly combative when low.

He got another glass of juice. And the phone.

“Kerri, you need to drink this. If you don’t drink it, I am going to call the paramedics. “

After being told, repeatedly, to go fuck himself, [Note: I'm still embarrassed by this.] Roommate dialed 911. Three paramedics showed up, one slightly chubby. I am in bed, at a minimal level of functionality. I don’t remember what happened from here on in, but Roommate told me I was belligerent.

Roommate told them I rang in at 44 mg/dl. They grabbed the red and white tube of InstaGlucose from their med kit and advanced on me. In the throes of my low, I fought them off as best I could. They outnumbered me considerably; it took three paramedics to hold me down well enough for Roommate to administer the InstaGlucose in my fitful mouth. The paramedics let me loose. As the sugary substance absorbed into the inside of my cheeks, I turned to Roommate with a resounding “Fuck you!” I whirled to the most portly of the medics and growled, not unlike Linda Blair, “You too, fatty!”

I came around very slowly. I don’t remember much of how I ended up downstairs, but I am told that I wandered down the staircase and stood at the front door, clutching my blanket around my shoulders and murmuring, “I want my Daddy.” Because that’s not at all embarrassing.

Roommate told the medics that I would be fine in a few minutes, having just tested me and yielding a result of 68 mg/dl. “She’s on the upswing. She doesn’t need to go to the hospital.” To confirm my agreement, I had to sign a release form, stating that I refused to be brought to the hospital. I signed, half in a fog.

Fast forward to me in the shower, getting ready to go to work. The medics are gone. Roommate is sitting on the bathroom counter, monitoring me. I start to remember what happened. We talk about how everything is okay now, and how sometimes a low just sneaks up and destroys me.

I’m feeling much better. A little embarrassed that I was such trouble, but no harm, no foul, right? I smile sheepishly. Safe now. Abby was prowling about on the bathroom floor, making sure everything was okay now.

“Yes, Kerri. You did okay.”

And as the warm water washed away the traces of InstaGlucose from my arms and eased the tension in my muscles, I gasped in shock as I cried, “Oh my God! … I called them fat fucks, didn’t I?”

The laugh from the counter top confirmed.

More on Redefining the “Diabetes Diet.”

In keeping with the thought process from yesterday (talking about what makes me view food choices as something to hide), I wanted to reshared this video from last year about redefining my perception of what a “diabetes diet” really means.

I don’t want to view food as something I’m punishing or rewarding myself with.  But that mindset is hard to stick with, at times.

Do you subscribe to the whole “diabetes diet” mentally, or do you view your food as (gasp!) food?

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