I Smelled It

 

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.

 

 

 

 

 

 

Pre-existing Conditions Revisited

I  haven’t spent much time here on the blog this summer. Vacations, family, kids in and out, badminton tournaments, long walks, and a new baby (a beautiful black-haired girl came into our lives a week ago thanks to my son and his lovely wife)–all of these hot-weather joys have quieted my yearning for expression. Instead I’ve been basking.

I’ve even tried to eschew the news and haven’t done a bad job. But this damn healthcare business won’t stop. The people whose healthcare won’t change are determined to make the American people pay for the hollow promises they’ve spent the last seven years making. Their brazen disregard for the elderly, the sick, the unemployed is mind-boggling. In fact, it’s so mind-boggling lots of folks are immune to it.

I can’t tell you how many conversations I have had with folks about healthcare that ended with someone saying with cynical shrug of shoulders, “It won’t happen.”

I guess I’m not that cynical. I believe that they will, if they can, take healthcare coverage away from the most vulnerable among us. And we are all vulnerable. High blood pressure, heart disease, anxiety, pregnancy, diabetes, cancer–if we don’t think we have pre-existing conditions, we are sadly and dangerously mistaken.

My daughter has Type 1 Diabetes. My father has life-long heart disease. My sister has a thyroid condition. I had an eating disorder when I was a kid. It’s time we took the legislators seriously. They are out for our healthcare.

Call your senators people. Call them now. Call them repeatedly. We must keep up the pressure.

The 49th Year

63 years ago, an 11-year old boy who loved baseball sat right next to his mother while a kindly old pediatrician explained to him–you have a hole in your heart. This meant for that young boy, no baseball, no track, no basketball.

I imagine this appointment broke that little guy’s heart, and his mother’s too. They didn’t have a lot of resources, and whatever disappointments they were handed, they took chin first. I have a picture of them in my mind, sun filtering through a high dusty window–dust motes flickering in the air. There were no tears.

Not quite 20 years later, my dad had open-heart surgery at The Cleveland Clinic to repair that hole in his heart. He had a scar that began at his belly button and traveled up almost to his collar bones. My mom remembers seeing him for the first time post-surgery, the breathing tube…

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What Jimmy Kimmel Said

63 years ago, an 11-year old boy who loved baseball sat right next to his mother while a kindly old pediatrician explained to him–you have a hole in your heart. This meant for that young boy, no baseball, no track, no basketball.

I imagine this appointment broke that little guy’s heart, and his mother’s too. They didn’t have a lot of resources, and whatever disappointments they were handed, they took chin first. I have a picture of them in my mind, sun filtering through a high dusty window–dust motes flickering in the air. There were no tears.

Not quite 20 years later, my dad had open-heart surgery at The Cleveland Clinic to repair that hole in his heart. He had a scar that began at his belly button and traveled up almost to his collar bones. My mom remembers seeing him for the first time post-surgery, the breathing tube running into his throat–he looked like he’d been hit by a Mack truck. Family legend has it that her knees gave out and she sank to the floor right where she stood.

He survived the surgery (and another one 40 years later) and continues to live even though his heart still gives him the business. But his heart disease was a pre-existing condition. My parents spent the next 40 years, making sure that he had some sort of employee-sponsored insurance plan, and my dad worked his damn ass off–that’s for sure. But when he changed careers late in life, my mother went to work to make sure they had insurance. It wasn’t a given–not until they aged into Medicare.

 

***

30 years ago, a skinny college student with short hair, packed up her 1974 Dodge Gold Duster and drove home. Her parents were admitting her to a psych/eating disorders unit with her consent. She could no longer remember eating a meal that hadn’t been fraught–food was both enticing and frightening. She couldn’t eat with control like other people. The vomiting. The shame.

For close to 60 days, I lived on a split-third floor in a residential psych hospital. Half the floor housed mood disorders and half the floor housed eating disorders. There was overlap. I was not cured when they released me a few days before my 21st birthday, but the long stay did disrupt the cycle of binging and purging that marked the hours of my days.

There would be no more treatment. I now had a pre-existing mental health condition. Insurance companies could attach this nifty little thing called a rider to insurance policies. A rider excludes coverage for certain conditions. I aged out of my parents’ policy because I was no longer a student and I was 21, so insurance was out of the question until I was married and on my husband’s policy. I learned quickly to omit those 60 days from my health history.

***

In 2013, my 14-year-old daughter lost 25 pounds, drank a ton of water, and stopped menstruating. I thought she was following in Mom’s footsteps, but I could find no evidence that she was purging. In fact, it was weird, she was drinking sodas and gobbling down big bowls of Captain Crunch and Frosted Flakes. She had never been a sugar girl. She’d always preferred popcorn to Pop Tarts, peanuts to pie. I couldn’t figure this one out.

There was the strange issue about her smell though. She smelled like fingernail polish remover. I sniffed her. It drove her crazy. I sniffed her some more. She frowned and pouted and peed like mad. It took me a day or two of sniffing, but finally I looked it up–breath that smells like fingernail polish remover. And there it was–diabetic Ketoacidosis.

The nearest children’s hospital is almost three hours away. The ambulance was just the right size for the nurse and the IV delivering life-saving insulin and my daughter. I tried to climb in there with them, but there wasn’t enough room, so I had to travel with my husband. It was a quiet trip.

Insulin, test-strips, meters, needles–they aren’t cheap, but they cannot be done without. Type 1 Diabetes is an auto-immune disorder. My daughter’s pancreas doesn’t produce insulin. There is no option for discontinuing treatment other than death. As we prepared to leave the hospital–to begin our post-diabetes life, the social worker told us–You are lucky the affordable health care act is in place. She was even a little scoldy, perhaps she was tired of arguing the ACA’s benefits–without Obamacare Type 1 Diabetes can be a nightmare for young people.

***

Just last week, while I sat in a hospital room with my dad who was soon to have his  heart shocked back into a sinus rhythm after a year of atrial fib, the House of Representatives voted to repeal and replace certain provisions of the Affordable Care Act.

While our president mouthed all over the place that pre-existing conditions would continue to be covered, the  new provisions allow states to apply for waivers that would let health insurance companies offer paltry policies. These policies wouldn’t be required to cover the 10 essential health benefits mandated in the ACA. States who wanted the waivers would have to set up so-called high-risk pools — to protect insurers from high-cost patients–like my sweet daughter.

My daughter, Peanut, and is 18. She graduates high school in one week. She can remain on our health insurance policy for 8  years. But what happens when she leaves our policy? What happens when she graduates college but finds a job that doesn’t offer employer-sponsored health care? She can’t go one day without insulin. How does she survive?

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Peanut on her way to Prom May 2017 (dad and Wonder photobombing in back left corner)

Here’s what a caring gal told me on FB about my concerns: if one of my four children was in a position where medical premiums or costs were incurred I would advise them to disconnect their internet, get a cheaper car or take the bus, and eliminate things that weren’t essential to take care of that responsibility.

I couldn’t respond to that.

How do you respond to that?

I guess this post is my response.

I’m going to leave you with Jimmy Kimmel who said it all so well.

A Story About Type 1 Diabetes

Four years ago today, my daughter Audrey was diagnosed with Type 1 Diabetes. This is our story.

The 49th Year

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…

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