Animas

The Pit

admin — Thu, 01 Jan 1970 00:00:00 +0000

A few months before her Type 1 Diabetes diagnosis, my 19-month-old daughter required IV rehydration in the ER following 48 hours of vomiting due to a stomach bug. Her chemistry panel showed a fasting blood glucose level of 128 mg/dl. I remember feeling a distinct pit in my stomach when the doctor was going over her lab values with me. 128 mg/dl? As a R.N., I recognized that 128mg/dl seemed a bit high for a fasting BG. When I questioned it, the ER physician agreed that 128mg/dl was “on the high side”, but attributed it to her illness.

I accepted her explanation of the lab value, and that was that. After some IV fluids, nausea medication, and another day of rest, she started feeling better. Life went on as normal.

But The Pit in my stomach never went away.

The first time she woke up with sheets drenched in urine, The Pit flared up. The first time she was sitting on my lap, and her diaper leaked, The Pit started knocking. The first time she downed 8 ounces of water before begging for more, The Pit began screaming.
The Pit was nagging enough that I discussed my concerns during her 2 year well visit, but the pediatrician didn’t see any reason to investigate further. He casually told me to keep any eye on her symptoms. I left that appointment figuring that I was just being an over reactive first time mother.

Three weeks later, I took my daughter back to the office. This time they called 911 for an ambulance transfer to the ER. Later that afternoon, she was flown to the PICU via helicopter. Her diagnosis: Diabetic Ketoacidosis.

The Pit.

“A hunch”, “a knack, “an inkling”. Call it what you may, but there is no disregarding the familiar instinct I have come to know as The Pit.
Mothers comprise a substantial portion of the diabetes community, both online and off. Whether a mother is the parent of a child with diabetes, a person with diabetes herself, or both, there is no denying the impact that mothers make in the lives around them. The mothers I’ve encountered in our diabetes bubble seem to have a common ground: They each have an inherent desire to protect, nurture, and teach their children the ways of the world.

Science cannot explain the instinctual phenomena, commonly called “maternal instinct” (i.e. The Pit), but it is this intuitive response that has been known to wake a mother from a deep slumber with an undeniable urge to test her child’s blood sugar immediately – more often than not, she will discover a blood sugar issue that requires an intervention.
It is the The Pit that captivates a mother, and forces her to stare a little deeper from the side lines, looking for symptoms of trouble that only she can recognize. It is The Pit that stuffs a few extra glucose tablets in her child’s pocket before they run out the door to play. It is The Pit that comes up with Plan A, B, and C for any given scenario, but is always ready with Plan D, just in case.

Sometimes The Pit feels literal. Sick day management, ketones, numbers, numbers, and more numbers! The truth is that, oftentimes, raising a child with diabetes is…THE PITS! When blood sugar mayhem breaks out, mothers may find themselves at the bottom of a confusing pit of emotion. It takes time and experience to learn the difference between intuition and anxiety.
Oh, but when The Pit is on the top of its game!!! How quickly things can turn around when The Pit takes over, and things begin to fall back into place!

My daughter’s diabetes diagnosis taught me never to ignore The Pit. It taught me to advocate for all my children, even when it seems no one will listen. I have come to regard The Pit as a tool that will help to shape me into the best mother I can be.
To all the mothers reading this, I wish you a very happy Mother’s Day.
I’m glad we’re in this pit together.

Cupcakes

admin — Tue, 01 May 2012 00:01:06 +0000

“What is your blood sugar, Kerri?”

I didn’t want to look at her, because I knew she’d be mad. She wasn’t asking because she wanted to know, but because she already knew.

“Muhmm meigh meh,” I replied, keeping my eyes down in defiance.

“Say again, please?” I didn’t need to look at her to know that her hands were on her hips and her eyes were sharp with daggers.

“Two eighty five.”

When I was a young girl with diabetes, I wanted to do all of the right things. I really did. I tried to follow the rules that were set out by my endocrinologist and by my parents, but sometimes I made a conscious decision to screw up. I don’t know why. I really wanted to do all of the right things, but sometimes I simply didn’t.

And sometimes I was a jerk about it.

My mother was furious at me that afternoon. I was about nine years old, and I remember the discussion distinctly. She found the cupcake wrappers in the garbage can in my room, and she made me test my blood sugar in front of her.

“Did you eat those cupcakes, Kerri?”

Insolent, indignant little mess that I was, I lied, bold-faced, to my mother.

“No! No, Mom, I definitely did NOT eat those cupcakes. I didn’t.”

“Are you sure?” She had the wrappers in her hand at this point. I’m pretty sure I had a ring of chocolate around my mouth as I answered her. Oh, and let’s not forget that my blood sugar was ringing in at the edge of 300 mg/dL.

“I’m positive. I didn’t eat them.”

Even though I did. I clearly did. I remember eating them just moments before she came home from work. I’d had those cupcakes squirreled away since my ride home on the school bus, and I devoured them in secret, in my room. I didn’t test first. I didn’t take an injection for them. I pretended, for five minutes, that my diabetes didn’t exist, but then spent the next hour being reminded that it did.

My mom was mad – so mad – not because my blood sugar was high, or even that I ate the cupcakes. She was furious because I lied to her about it. And now, as an adult with a better understanding of diabetes and parenting and my mother, I realized how hard she worked to keep me healthy and safe. And how hard it was for her to calculate the right sliding-scale dose for all of my lies.

“We can figure out how to eat cupcakes, but you can’t lie. If you’re going to eat something like that, or you want to eat something like that, we can find the right insulin dose and then you’ll have cupcakes and not be 300. Do you understand?”

“I do.”

“No more lying.”

“I won’t, Mom. And I’m sorry.”

She hugged me. I hugged her back. My mother always had my back, even when I was struggling to find the balance between the responsibility of diabetes and the influence of childhood immaturity.

Which is why, now twenty-three years later, I’ll finally admit the truth she already knew: Mom, I ate the cupcakes.

Even though you knew, you knew … you always knew.

She's Not Alone

admin — Thu, 01 Jan 1970 00:00:00 +0000

3 – 2 – 1 … 258.

My eyes were burning and squinting as the delicately positioned flashlight slipped, sending a brilliant glare through my pupils, into my tired brain.

Let’s face it: 258 just isn’t a number I want to see right before midnight. It means that she’ll need a correction…and another sugar check in 2 hours…and this sequence has potential to repeat itself indefinitely.

In essence, it means this night just got a little shorter.

I decide to set my cell phone timer, and camp out on the couch. My husband leaves for work very early, and I don’t want to wake him prematurely. I grab a quilt and just as I can feel myself falling off the edge of reality, I’m awakened by someone crying.

The six year old has an earache.

I jump up to get her some pain medicine, throw the rice sock in the microwave, grab her blanket, and set her up on the couch beside me. The minutes are ticking, and we both need to get some sleep before that alarm begins blaring. We toss. We turn. We drift off. We wake up. The rest of our night seems to alternate between blood sugar checks and a dose of acetaminophen, with an occasional power nap in between. By daylight my head is foggy and my eyelids feel like boulders, when a very energetic four-year-old comes bouncing out of her bedroom, ready for breakfast.

A new day has dawned.

It’s easy to get lost in the day-to-day (night-to-night?) grind of managing a child with diabetes. The world often fades to the background, and blood sugar details become all-consuming. Except, in my world, there are still two other little people who need their mommy.

They want to be pushed on the swing and chased at the park. They get coughs and colds. They scrape their knees and bump their heads. They share an equal part of my heart, and I love them beyond measure. I was equally thrilled when they learned to ride a bike without training wheels, wrote their names for the first time, and tied their shoes without help.

But…they also live with diabetes. While they don’t experience low and high blood sugars, they do worry when something isn’t right with their sister. Even at their tender ages they know how to test her blood sugar, where to find sources of glucose, and how to call 911 (just in case they ever need to). These are the girls who will grow up on either side of her, and they are equally in tune with the amount of time and energy it takes to manage diabetes around here. They are not immune to the reality of the toll this disease takes on our family-- from sleepless nights, to tight finances, to frightening blood sugar moments. Type 1 Diabetes affects the entire family. No one is more aware of this fact than the siblings who must grow up in the shadows cast by this disease.

I am very proud of these girls of mine. Those smiles are the brightest parts of my day, and diabetes can’t EVER take that away.

Old School Glucose Meters

admin — Thu, 26 Apr 2012 00:49:35 +0000

Finding a New Doctor

admin — Fri, 13 Apr 2012 23:02:25 +0000

I am a list-maker. I make grocery lists, work to-do lists, lists of books I want to read and articles I want to write, and even lists of lists I need to make. (Whoa.) On the surface, I seem painfully organized … but I have everyone fooled. Because I am definitely that person who leaves the grocery list on the kitchen counter and then wanders the store aisles aimlessly, trying to remember what I originally wrote down and ending up with a lot of accidental popsicles in my cart.

I do have an unwritten list, though, when it comes to my medical team wishlist. And try as I might, those few items aren’t up for negotiation.

For way too long, I used my endocrinologist as my makeshift primary care doctor. This isn’t the smartest move, since my endo is located in Boston, and I live an hour away in Rhode Island, but mostly because my endo is tasked with handling my diabetes. A primary care doctor is responsible for managing the day-to-day “real people sick” sorts of things, like a cold or flu, or prescriptions for things like antibiotics. Endos are specialists; I needed a generalist.

However, when I was planning my pregnancy and then subsequently pregnant, I used the powerhouse combination of my endo and my OB/GYN to manage EVERYTHING, well-past the birth of my daughter. Honestly, my pregnancy team had me from ten weeks prior to my child’s conception until six months after giving birth (thanks to breastfeeding). It’s only recently that I started searching for a local primary care physician (PCP, for short), and it’s a search that’s long overdue.

My wishlist for a PCP is short, but precise: I wanted a doctor who was at least familiar with type 1 diabetes care, even though I still see Joslin specifically for my diabetes care. I wanted to have a doctor who was comfortable discussing diabetes stuff, and who would be okay with shuttling information back and forth with my endo at Joslin. Lastly, this magical PCP had to be a woman, because – try as I might – I don’t feel completely comfortable discussing my emotional health with a male doctor. (No offense at all to male doctors. There are so many great ones. Just not one that fits my needs.)

I made a few phone calls to area physicians.

Ring. “Hello, you’ve reached the offices of [doctor]. Our offices are closed. Our business hours are from 9:30 am – 3:30 pm, closed on Wednesdays.”

Open six hours a day? Only four days a week? No way. Picked another one.

Ring. “Yeah? What?”

I hung up.

Ring.. “Hello, Dr. Nope’s office.”

“Yes, I’d like to see if Dr. Nope is taking new patients.”

Barely concealed laugh. “You’ll need a referral. Dr. Nope doesn’t bother with patients without referrals.”

Condescending chuckles and “bother with?” I added one other thing to my wishlist: polite staff.

Searching for a new PCP was like going out on a bunch of first dates. But eventually, you do find The One. And for me, it was a very kind doctor who completely acknowledged the psycho-social impact of diabetes on overall health … but she was still determined to help me hit my goals. She’s realistic, upbeat, and understands that the whole person needs to be taken into account when it comes to good health.

I like her. She’s a good match for me. And now I can cross “find a PCP” off one of my lists.

What Lows Look Like

admin — Tue, 20 Mar 2012 23:11:10 +0000

Steel Magnolias is a movie that comes up a lot in the diabetes community (most likely because it’s one of the only mainstream movie representations of type 1 diabetes, aside from Panic Room), and the focus seems split between two themes: pregnancy with diabetes and that moment in Truvy’s salon when Shelby has a low blood sugar.

“Drink the juice, Shelby,” is the urgent plead from Olympia Dukakis’s character. The other characters in the scene flit around and beg Shelby to drink the orange juice, while Shelby blubbers, through tears and a mouthful of orange juice, “Don’t talk about me like I’m not here.”

It’s one of those curious moments, especially for a person with type 1 diabetes, because you find yourself leaning closer to the television screen, your mind wondering, “Is that what I look like when I’m low?”

I’ve wondered a lot about what a low looks like on the outside. I know what it feels like to play host to a severe low, but even though I’ve written about hypoglycemic episodes dozens of times, they’re still near-impossible to fully capture with words. It’s hard to explain how “dizzy” doesn’t quite capture the feeling; it’s more of a combination of dizzy, spinning, adrenaline, and panic, like you’re so far down the rabbit hole that there aren’t any roots left to grab.

My friends, back in college, used to tell me that the Steel Magnolia’s version of a low blood sugar wasn’t quite what mine looked like. “You look more lost, less belligerent. When you’re low, you look like a lost five year old, like you’re about to cry and you need your hand held.”

“I do?” I asked.

“Yeah. Sometimes you blurt out weird accusations, like when Julia Roberts said to not talk about her, but that’s the only similarity. And your hair never quite had that kind of Julia Roberts-volume.”

“Truth,” I admitted.

At a diabetes conference a few months ago, I saw someone having a severe low blood sugar. Her body was twitching just slightly, her eyes were shifting their focus so quickly that she couldn’t focus on anything, and her arms were reaching out for something to steady herself. But these symptoms weren’t leaping out to the untrained eye. It was a blessing that she was at a diabetes conference, where fellow attendees were trained to spot these symptoms. Someone helped her sit down and kept her conscious while I ran to get juice. In the span of just a few minutes, her situation went from quietly dire to “just fine,” and after about twenty minutes, she seemed fully recovered.

It’s strange how a low blood sugar can feel so intense when you are experiencing it, but to someone watching you, it doesn’t seem like a big deal. Even if you’re panicking and mentally clawing your way back to consciousness, you may look fine. Lows vary from PWD (person with diabetes) to PWD, and those symptoms can even vary from low to low. One low may have you visibly shaking, while the next one comes without a whisper of a symptom. Diabetes is so deceptive, seemingly invisible at the times you need help the most.

Thankfully, there are people who know what to look for, and how to help, and won’t ever, ever talk about you like you’re not there.

Diabetes and Love

admin — Thu, 15 Mar 2012 15:57:28 +0000

“Cosmic Truth”

admin — Thu, 01 Jan 1970 00:00:00 +0000

Why is it that JUST when I feel like we’re seeing a solid streak of decent blood sugars, a random 400mg/dL shows up on the meter? Seriously...like, THE very second I think to myself that things quite possibly may have been going fairly well, there’s some sort of cosmic explosion, and everything changes.

The troubleshooting begins: Miscounted carbs? Site problem? Missed bolus? Spoiled insulin? Getting sick? Growth?

Round and round and round we go…where we’ll stop, nobody knows.

I wonder if standing on my head while balancing her meter on my big toe would make a difference. I mean, when nothing else makes sense it could be worth a try, no? Lucky rabbit’s foot, shamrocks, horseshoes…whatever it takes!

Sometimes I’m willing to try anything to make sense of those random cosmic blood sugars. “No apparent reason” doesn’t satisfy my insatiable need to answer the WHY so I can figure out HOW to avoid such shenanigans in the future.

That being said, I don’t have the energy or mental capacity to obsess over…Every. Single. Blood. Sugar. There was a time when I would take each number personally – as if the reading that flashed before my eyes was somehow, a reflection of me as a mother. There were times I could hear the meter screaming things that weren’t true…telling me that I wasn’t smart enough to figure this out; or strong enough to handle the pressure; or confident enough to trust my instincts. I could hear imaginary laughter mocking my best efforts to manage this precious child, whom I love so much.

If I’m honest, there are moments when I still hear those voices of discouragement. The past several years have taught me to see her numbers as a blueprint, mapping out the big picture of her overall diabetes management, but sometimes it feels that the weight of a difficult number has the power to make me or break me.

And so it goes.

One fingerprick into the next, day into night, night into day. At times, I begin to wonder if there’s a storm of frustrating numbers pouring from the sky. Inevitably, my brain starts to spin, as I work through the unspoken algorithms in my mind.

And then she smiles. Her laughter is contagious, and her eyes sparkle. The silly awkwardness, as she discovers her place in the world…the way she reads to her sisters while I’m fixing dinner…her ability to make friends with everyone around her. She’s quick to help anyone in need, and willing to try anything once.

No, Wendy. Those numbers don’t define the mother you are.

She’s a strong, vibrant, and happy child. It’s the unspoken words…the truth that exists between the numbers…the memories that you wouldn’t trade for a million dollars: this is the proof that You Can Do This.

The Impact of Good and Bad

admin — Wed, 22 Feb 2012 21:25:04 +0000

A friend of mine is in training to be a clinical psychologist, focusing on adolescents with chronic illness, and she and I have been talking a lot lately about the impact certain words can have on the emotional health of a patient with diabetes.

“When does it matter, the words they use?” she asked me, over coffee.

“Sometimes it doesn’t. Sometimes I don’t care if they say, ‘Oh, your blood sugars in the morning are really good,’ or ‘These afternoon values are consistently bad.’ But there are other times when I want to slam my fist against the desk and say, ‘It’s not good or bad! They’re just numbers!’ I think it depends on where my head is at, in that particular moment.”

She nodded. I continued.

“Numbers aren’t ‘bad.’ It’s taken me almost twenty-five years with diabetes to really wrap my head around that concept, but it’s the truth. A blood sugar number can be out of range. High, low, in-range, dropping, rising … but words like ‘good’ and ‘bad’ don’t really apply.”

“How do you mean? Like can a 230 mg/dL ever be ‘good?’”

[Note: My friend doesn’t actually say the words “em gee dee el” when she speaks. I added that in to make sure readers knew she was talking about a blood sugar. But I wish everyone said “em gee dee el.” I might start that trend.]

“It can be. The other day, after a workout at the gym, I was 47 mg/dL. The low symptoms were really intense, and I over-treated simply because I was so sugar-starved that my body was on autopilot. Eat until you feel better, you know? The whole ‘fifteen grams of carbs; wait fifteen minutes’ thing goes out the window when your body is bugging out. After that reaction was over, I was grateful to see a 200 result. My perspective was different; it became a ‘good number.’”

She took a sip, thinking.

“The same way a 90 looks mighty fine after being 300 for a few hours?”

“Exactly.”

“Okay, so you can think in terms of ‘good’ and ‘bad,’ but when your healthcare team assigns those kinds of adjectives, it makes you mad?”

“Not mad, but frustrated.”

She shot me a look, knowing how I normally react to things.

“Fine. It makes me mad sometimes,” I admitted. “It comes down to assigning blame. If you view numbers as good or bad, it might make you test less often because you don’t want to see bad numbers. For me, the only truly ‘bad’ number is the one I didn’t find out about.”

She laughed. “You sound like one of those The More You Know commercials. With the star, going over your head?”

I giggled. “I guess I do. But it’s true, dude! It’s not like I don’t feel responsible for those numbers or am trying to absolve myself of responsibility. It’s more that life with diabetes comes with enough of the guilt, and I need to sometimes treat these numbers with less subjectivity. It makes it easier for me to react to them, to change them, and to make improvements. Otherwise, I’m looking at my meter every few hours and feeling judged instead of empowered. And the goal is to keep looking at the meter, to keep checking, to keep tabs on all this stuff.”

She nodded. “So the numbers matter. But the words do, too. And as a healthcare professional, I can help by removing as much assignment of emotion as possible, because you’re already assigning enough as it is? Even when you wish you weren’t?”

“Exactly.” I took out my meter and quickly stabbed my finger with the lancet, taking a quick blood sugar check. “Well look at that. 98 mg/dL. Right in range.”

“Yay! I’m happy for your in-range number! Keep up the in-range work,” my friend replied, smirking.

Hand Holding

admin — Tue, 14 Feb 2012 17:30:43 +0000

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<![endif]-->In the course of my experience as an advocate for diabetes, I’ve had people ask me what my parents did to help me become a well-adjusted adult with diabetes. And after I stop laughing at the clearly loose definition of the phrase “well-adjusted,” I realize that I have the support of my friends and family to thank for my diabetes emotional health.

Like my mom. We fought about all kinds of stuff while I was growing up (because I was a little bit of a stubborn child … please, hold your looks of surprise), but I’ve always thought of her as my mom and my friend, even though we battled.

My mother and I fought long and hard about a lot of things. We fought about my desire to shorten the hems on my skirts. We battled about my bangs constantly hanging in my face (this drove her mad, apparently). We fought about how much I was on the phone, or whom I was going to the movies with, or the fact that my socks never, ever matched because I thought Punky Brewster was awesome.

And we also battled about diabetes. But those battles weren’t angry or aggressive; they were vehement and passionate. It wasn’t a nasty fight, but our hearts were on our sleeves in a very clear way: my mother just wanted to keep me safe; I just wanted to ignore diabetes sometimes.

When I was very little, I remember my mom doing my first few months of injections. I took over when I was about eight years old, and then went through a mental block of not wanting to do it. I would put the syringe to my thigh, rest the tip of the needle against my skin, but I couldn’t push it through. There was something about feeling my skin release and accept the needle, that pop when the needle would imbed itself into me … just grossed me out.

“No, no!! I don’t want to do it!” I would throw the syringe and hide behind the blue, floor-to-ceiling curtains in the living room, my feet sticking out but convinced I couldn’t be detected. But my mother would find me, pull me out, and ask me what the problem was.

“Is it the needle? Are you scared of the needle itself?”

I sniffled and shook my head. “No, Ma. I just don’t want to do it myself. I don’t want to push it in. Can you do it this time?”

And she would, in that quick-but-gentle way she had with the syringe. As she re-capped the needle, she would ask me, “Tomorrow? You’ll try it tomorrow, right?”

“Yes, mom.”

This mental block about injections went on for several months, and we’re not sure what made me ready to do it again. It was an emotional roadblock (resistance) that deterred me from making a physical action (taking the injection), and fixing it took more than just literally forcing my hand. What I do know is that this whole growing up with diabetes thing, at times required some hand-holding. For my family, it wasn’t a disease we could just read all the “necessary manuals” for, and then have it mastered. The road to living well with diabetes is paved with trial and error, stumbles and successes, plain-old winging it, and caring people.

My mother made diabetes something that we did together, until it was something I could do alone. And even now, twenty-five years into this whole thing, I’m still not completely fending for myself. I lean on my friends and family for support when I have trouble staying on-task, health-wise.

When I stumble emotionally, it helps so much to have someone’s help for just that moment, urging me to try again tomorrow.