Tag Archives: Type 1 Diabetes

I Smelled It

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I smelled it.

Every time I got close to my daughter, Audrey, I smelled fingernail polish remover.

I smelled it for a week, on her breath and on her skin. I sniffed her for a week while she slept—and she was sleeping a lot—while she ate, while she watched TV. Every time she turned around, there I was with my nose in her hair, or trying to get a whiff of her breath.
I knew something was wrong.

 
There were other symptoms, sure. She was dropping baby fat which could be explained away by her age—14. Maybe she was hormonal. Maybe her body was changing. Maybe things were shifting as she grew taller. She ate strange things like Frosted Flakes and Snickers bars, and she started gluting soda and lots and lots and lots of water. She peed all the time.

Of course, I attributed the peeing to the water drinking and I attributed the water drinking to the weight loss—I thought it was a strategy, one I had used my entire life; drink more water in order to fill up, in order to eat less food.

It wasn’t a strategy.

 

The night before the diagnosis, the fingernail polish remover smell rippled around Audrey like a gas leak, and so I asked a others to smell Audrey’s breath and still no one smelled it. Normally the lack of accord would have consoled; however, it did not console because I COULD smell it; at this point, I could see it.

I didn’t sleep that night because I was busy shuffling into Audrey’s room to smell her. Did I really smell it? Each time I leaned in for another sniff, I answered the question. Yes, I still smell it. In the morning before I woke her, I smelled her again, and knew I would have to do something. I woke her, took her to school, and then googled this: “Breath that smells like fingernail polish remover.”

 
And there was Dr. Oz. Dr. Oz and diabetes.

Now most of the time, I’m okay with Oz. He’s familiar, a friend of Oprah’s a purveyor good health! But the doctor had bad news. He warned that the fingernail polish remover smell was ketones, and ketones might mean diabetes.

I called the pediatrician, related to the receptionist my Google sleuthing and that I suspected, but wasn’t sure, of course, that Audrey’s blood sugar might be high. “Could she have a glucose test,” I asked. She’d get back to me, she answered.

And then I took a walk. You see, there was a part of me that knew Audrey had diabetes and there was a part of me that refused to believe it. Disbelieving Bridgett went out for a nice walk and saw some things that seemed like omens–a couple of big crows, a sky smudged gray, and a tree full of starlings.

I walked for a bit, and soon my phone jangled and the receptionist encouraged me to retrieve Audrey from her 8th grade classroom and bring her in for a blood test.

I called ahead to the school.

Audrey sat pale and drawn in the school office. I explained that we were going to rule out diabetes. Or maybe I didn’t say diabetes at all. I was toying with the slight chance that I was a worrywart with a tumor that caused me to smell strange scents on other people. Can’t tumors cause you to smell strange scents?

At the clinic, a lab tech drew blood, and then Audrey and I went out for lunch before I dropped her off at school. Within ten minutes the doctor called.

 
“Audrey has diabetes,” he said.
“Her blood sugar is over 300,” he said.
“We will need to transfer her to Children’s hospital in St. Louis,” he said.

“Okay,” I answered.

That’s when he paused, “Bridgett,” he said, “go get Audrey right now, take her to the ER, so they can stabilize her for the ambulance ride to St. Louis.”

“Stabilize her.” he said.

I remained calm, but I repeated his words.

I said to my husband who was home for lunch. “Go get finished up at work while I pick Audrey up and take her to the hospital, so they can stabilize her.”

I called my parents, “I’m taking Audrey to the hospital. She has diabetes, and they need to stabilize her.”

I called the principal and told her, “Get Audrey out of class, I’m on my way to get her. We have to go to the hospital, so they can stabilize her.”

Stabilize her scared the shit out of me. Stabilize her is not something you want others to have to do to your daughter.

It took four hours to stabilize Audrey, and when they did, they rolled her into the back of an ambulance, and my husband and I got into our van and drove to St. Louis.

 

The nice people at children’s hospital told us we were lucky Audrey was diagnosed on a Friday because diabetes education was unavailable on Sundays. We’d have one extra day to learn about taking blood sugars and giving injections and dangerous lows and Diabetic Ketoacidosis. And when we left on Monday afternoon after finishing our education, we didn’t think we were lucky, we didn’t think we knew enough, and we were very worried all the time.

Five years later, that hasn’t changed.

You know, people, as far as I can tell, like a good illness narrative where the main characters learn big lessons about life, love, and living. I can’t say it doesn’t happen. In fact, I’m sure it does, but mostly diabetes stole Audrey’s childhood and robbed me of the handy delusion that I could keep her safe.

As delusions go—it was a hard one to lose.

Today it’s been five years. We’ll mark it the way we always do—with story-telling. I tell Audrey’s story because stories connect us. We tell them to make sense of what we do not understand—and even when understanding remains elusive, we keep trying.

 

 

 

 

 

 

A Ruin

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Thursday morning I wake to the sound of rain falling on the yet to bloom hydrangea bushes outside my bedroom window. Birds are singing songs I wish I knew. I lie here for a long time. Every once in a while a car swooshes down the wet street and even though I’m not looking, I can see the water spray out from turning wheels and settle back into the ruts and potholes that keep our sleepy street sleepy.

Finally, because I have been writing in my head for three days, I get up and pour a cup of the still-hot coffee my husband made early before he went to work, grab my computer off the desk in the kitchen, and return to my rumpled sheets-only bed. Two fans are churning the air–one hanging from the ceiling and one to my left so that every once in a while air catches the edge of my sheet and billows it over my legs. I set the computer in a strategic position on my lap where its open screen beckons me to write this damned blog.

I write for over two hours. I write about laziness and artistic intention and summer’s long, loose days. I write about my lack of ambition and how I don’t have a job other than being a writer and a mother and a keeper of the house we all live in. But I’m not happy with it. Maybe this is a blog post for the future when I figure out how Keats’ idea of negative capability figures into my dueling theories that work is both bedrock and overblown.

My stomach’s in knots. I have words flying through my head, skittering across the screen as I try again and again to write my way willy nilly into this blog. When I’ve written for two hours and still have nothing, it’s time to chuck it. I push the computer from my lap as if it’s a misbehaving pug and go to the kitchen to smash an avocado and spread it on some toast.

***

An hour later, I’m dressed and on the front porch. The rain’s gone, and the birds continue to mock me with songs I don’t know while diving down to the wet grass for worms. A few years ago, I read somewhere that worms come to the surface to avoid drowning in the drenched soil, but that isn’t the truth. Worms surface because it’s a better way to travel. When the ground is wet, they slide along its surface instead of trudging through the thick clay.

Right now I count two robins doing their strange run a few steps and stop dance and three blackbirds walking like chickens in the front yard. So far, not one has  yanked a worm from its migration. It’s a good time to get back to the blog, before one of those birds commits worm murder.

What should I write?

I go back through my blog posts, thinking I might do an update of sorts:

√ No tassel yet. I haven’t done a thorough cleaning of the room, but I still suspect that our big pug had something to do with its disappearance.  He tilts his head in that cute and quizzical pug way when I stare him down.

√ No letter of apology from the oft-quoted and brilliant Annie Dillard who doesn’t read women authors although the legendary Gay Talese did get a thumping for his public admission that he couldn’t name a single woman author who inspired him.

√ My dad saw Peanut’s new tattoo, and he grimaced a little bit and shook his head in that sad and confused way I probably do when Peanut tells me she thinks she’d like a tragus piercing–WTF is a tragus?

√ My new bras are working overtime in this hot sultry weather and are standing up to the increasingly difficult challenge of keeping my breasts where they belong.

√ I continue, behind closed doors, to engage in humor that might be considered offensive. Case in point. Last night, Eric and I were joking around when he reached down beside the bed, grabbed his iPad and pulled up a picture of an old-timey baseball manager whose balls were clearly defined in his khaki pants. According to Eric this is called a moose knuckle. Who knew? I was both appalled and unable to look away. We laughed so hard I couldn’t fall asleep for another hour–or maybe I was just haunted–how could pants do that?

√ I went to hear Lee Martin (who is definitely a man, darnit) read from his new book last week in Lawrenceville, IL. He killed it, and still I can’t read Late One Night until January 1 because of the damned New Year’s Resolution I am going to keep because I haven’t kept the one about copying a poem every day although I’m trying which may or may not be the truth but is more hopeful than saying the effort is kaput.

√ Type 1 Diabetes still sucks. Last week, I took Peanut to the doctor in St. Louis for her three-month check-up. Her last appointment, three months ago, was one of bells and whistles and lots of cheering. Her A1C (this is a number that gives us a pretty good idea of what her blood sugar has averaged the past three months) was spectacularly good. Peanut (and I) received congratulations and huge smiles from the doctor, the dietician, the nurses, and the receptionists. The whole place was balloons and smiles and stellar numbers.

In Type 1 Diabetes, the numbers tell the story of blood sugar control; however, they do not tell the story of day to day life with the perverse permutations of this ill-willed opponent.  Blood sugar is a mighty hard thing to control, especially for teenagers whose activity, sleep patterns, and eating habits fluctuate on an hourly basis. I knew this three months ago when that A1C was good, and still I felt ridiculously proud. Proud of Peanut, and damned proud of myself too. If she was doing something right, then by God, I was doing something right too.

It’s a long way down when the numbers tell the story of blood sugar run amok.

We sat in the office, and Peanut’s doctor pored over the new numbers, trying to figure out what had happened to make a 7.1 go up to an 8.6, and the blood drained from my beautiful girl’s face. She sat beside me still and pale, her hands crossed in her lap while she watched her doctor puzzle through her records.

We expected the underwhelming report, we did. In the past three months, Peanut had changed insulin therapies three times with the requisite blood sugar highs that come along with insulin adjustment. This A1C hike wasn’t a surprise, but it feels like failure to Peanut who strives for control over numbers that are elusive and plain mean. And I can’t do shit. I am both embarrassed by my own failure and aggravated by my embarrassment. It’s a disease, for God’s sake.

√ Falling, failing, falling, failing–I fall every day. The sun has taken a liking to the faint scars from my overdone facial resurfacing. I don’t mind it too much.

And then there’s this–ruined might be a pretty good place to begin—from that very first blog post on February 4th.

Did you know that the archaic definition of “ruin” is “a falling down?”

I have been writing about “ruin” this entire time, and I didn’t even know it.

 

A Story About Type 1 Diabetes

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I smelled it.

Untreated or undiagnosed or unacknowledged Type 1 Diabetes smells like fingernail polish remover, and I smelled that on my 14-year old daughter, Peanut, three years ago today.

I was the only one who smelled it, and I smelled it for a week, on her breath and on her skin. I sniffed her for a week while she slept—and she was sleeping a lot—while she ate, while she watched TV. This irritated her a great deal, and I can see why. Every time she turned around, there I was with my nose in her hair, or trying to get a whiff of her breath. I knew something was wrong.

There were other symptoms, sure. She was losing weight which could be explained away by her age—14. She was hormonal. Her body was changing. Things were shifting as she grew taller. She was eating strange things like Frosted Flakes or Snickers candy bars, and she was drinking soda and lots and lots and lots of water. She peed all the time. Of course, I attributed the peeing to the water drinking and I attributed the water drinking to the weight loss—I thought it was a strategy, one I had used my entire life; drink more water in order to fill up and not eat so much food.

It wasn’t a strategy.

The night before the diagnosis, Thursday, March 14th, the fingernail polish remover smell rippled around Peanut like a gas leak, and so I asked a lot more people to smell Peanut’s breath because she and I and about 20 family cousins and grandparents and aunts and uncles were at a charity bingo that would raise money for cancer research. Not one aunt or uncle or grandparent or cousin smelled that fingernail polish remover smell on her breath which should have consoled me; however, it did not console me because I COULD smell it; at this point, I thought I could see it.

I didn’t sleep that night because I was busy shuffling into Peanut’s room to smell her. Did I really smell it? Each time I leaned in for another sniff, I answered the question. Yes, I still smell it. In the morning before I woke her, I smelled her again, and knew I would have to do something. I woke her, took her to school, and then googled this: “Breath that smells like fingernail polish remover.”

And there was Dr. Oz. Dr. Oz and diabetes.

Now most of the time, I’m glad to see Dr. Oz. He is a familiar doctor face with interesting ideas and strategies for good health. He’s a friend of Oprah’s! In fact, a few years ago, I saw his face in an ad for Acai Berry supplements for weight loss, and I bought the Acai berry supplements for weight loss because I thought that if Dr. Oz allowed his face to be used in the ad, Acai berry supplements must work. But this time Dr. Oz’s face (and his words, I believe) donned an article about diabetes. Dr. Oz said that a fingernail polish remover smell was ketones and it could mean diabetes. Just like before when he was selling Acai Berry supplements, I believed Dr. Oz about the diabetes. I finally knew why my daughter gave off the distinct scent of fingernail polish remover even though she never painted her fingernails and thus had no reason to be removing polish.

I called our pediatrician’s office after the Google thing, and told the receptionist the story about the fingernail polish remover and the Googling I had done and I said that I suspected, but wasn’t sure, of course, that Peanut’s blood sugar might be high. I asked her if our doctor would order a glucose test. The receptionist promised to talk to the doctor and get back to me.

And then I took a walk. You see, there was a part of me that already knew Peanut had diabetes and there was a part of me that refused to believe it could be true. The part of me that refused to believe it could be true went out for a nice walk and saw some things that seemed like omens–crows that may have been plain old black birds, gray skies and intermittent sun. I knew and I didn’t know. I don’t remember how long I walked while I waited for the phone call, but soon the phone I carried rang, and the receptionist said I should retrieve my daughter and bring her in for a blood test.

The day sped up. I called the principal, my sister, and asked her to have Peanut ready, and when I made it to the school, Peanut was sitting pale and drawn in my sister’s office. On the way to the blood test, I explained that we were going to rule out diabetes. Or maybe I didn’t even say diabetes at all. I was still toying with the slight chance that I was a worrywart with a tumor that caused me to smell strange scents on other people. Can’t tumors cause you to smell strange scents?

At the clinic, a lab tech drew blood, and then Peanut and I went out for lunch before I dropped her off at school. Back at home I sat at my computer reading over and over the same symptoms of diabetes I had read over and over all morning whenever I had a chance. Within ten minutes the doctor called. He was and still is a kind man, and as a conversation opener he asked me what had been going on with Peanut. I told him about the weight loss and the water drinking and the strange fingernail polish remover smell that prompted me to bring her in. And after I listed these symptoms, hoping that I didn’t sound like an Internet website, the doctor said he believed that Peanut did have diabetes because her blood sugar was over 300 (a regular blood sugar a few hours after breakfast would have been under 100).

And not only did Peanut most likely have diabetes, but we would need to take her to a hospital. I listened and agreed to the hospital bit, even the part where he said she would need to go to Children’s Hospital in St. Louis. Then he paused and said that he hoped I understood that he meant now. That she would have to go to a hospital now. I think I did understand this in a way, but in another way I didn’t understand it in that as long as we were talking about it we didn’t have to start acting. But he made it clear by saying that I needed to go get my daughter right now from the school and I needed to take her to the E-room of our local hospital, so they could stabilize her before putting her in an ambulance to leave for St. Louis.

He said stabilize her.

I remained calm, outwardly. But I said stabilize her over and over. I said to my husband who was home for lunch. Go get finished up at work while I pick Peanut up and take her to the hospital, so they can stabilize her. I called my parents, I’m taking Peanut to the hospital. She has diabetes, and they need to stabilize her. I called the principal and told her, Get Peanut out of class, I’m on my way to get her. We have to go to the hospital, so they can stabilize her.

Stabilize her scared the shit out of me. Stabilize her is not something you want others to have to do to your daughter.

Peanut, in desperate need of stabilizing, looked very scared when I picked her up.

My husband met us at the hospital where we talked to one of those traveling ER docs. He was short with thin dark hair and squinty dark eyes. He hooked Peanut up to an IV so she could receive enough insulin to stabilize her. While we waited for the stabilizing of Peanut, the little doctor told us something I still don’t understand. He explained with lots of hand movement and an encouraging smile that Peanut was lucky to have the good type of diabetes. And I still wonder if he meant she was lucky not to have the sort of diabetes in which there is a stigma—the sort of diabetes folks think you have given to yourself because you have eaten too much or haven’t watched your weight. And I thought then and I still think now that it is so much bullshit to blame people for their illnesses, and I didn’t listen to him a whole lot after that although it is entirely possible that I wasn’t listening very well to begin with, and perhaps I got confused about what he was trying to tell me because my baby was lying in a hospital bed and was getting read to be taken to a children’s hospital almost three hours away, and they were still stabilizing her.

And when they finally stabilized my daughter, they rolled her into the back of an ambulance, and my husband and I got into our van and drove to St. Louis.

The nice people at the children’s hospital told us we were lucky Peanut was diagnosed on a Friday because diabetes education was unavailable on Sundays, so we had one extra day to learn about taking blood sugars and giving injections and dangerous lows and Diabetic Ketoacidosis. And when we left on Monday afternoon after finishing our education, we didn’t think we knew enough, and we were very worried all the time.

And this hasn’t changed. I remain worried all the time. But when you must, you can push the worry back. And I do this. Sometimes I do this because I am brave and strong and other times I do this because I am drinking wine on a Friday evening.

It seems to me that many illness stories require a big change in the people affected. We like our narratives to prove that getting sick can change our lives for the better. I do not like those sorts of stories because diabetes hasn’t changed our lives for the better in any way. It did change things.

Mostly it stripped me of the illusion that I can control anything, that I can keep my children safe. When I say this, I imagine that people who hear me say it think that I’m wrong, that I can do lots of things right and that it makes a difference, and I’m sure that in the way they are thinking this, they are correct; but what I know is that nothing I did or didn’t do could have changed this. And that is a hard pill to swallow. There is no blame. It’s not about me.

 

Our lives changed three years ago, for sure, but lots didn’t change. For example, Peanut is beautiful, smart, funny, and extremely messy. Her room is a scary scary place. This was true three years ago.

Last night, I read this post aloud to Peanut who sat on the couch next to me, her head on my shoulder. We both cried.

Stories connect us. We tell them to make sense of what we do not understand, and there are times, like this morning, when understanding remains elusive. And still, we try.