insurance

Between Avalanches

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Maybe I was experiencing caregiver burnout and didn’t recognize it as such. I kept doing everything I was supposed to do: count carbs, give insulin, check for ketones. Since the election, I’ve been calling and writing my representatives in an effort to persuade lawmakers that people with pre-existing conditions need assured access to health care. I called while waiting at urgent care. I called before breakfast. I started to believe it didn’t matter how many times I called, but I called.

I tried to make peace with the fact that many of the people I love support the current administration that is creating policy that hurts my son.

I did what the insulin pump told me, and sometimes his blood sugars wouldn’t go below 200. I rage bolused.

I raised money for diabetes research. I tried to prioritize moments where he could be a kid instead of a kid with diabetes.

There were trips to the E.R. for minor diabetes related things, battles with insurance, problems with pump supplies, stubborn blood sugars, anxiety at site changes, surprise bills that arrived six months after date of service—all the “normal” things related to living with diabetes.

But there was also Friends for Life, an amazing conference in Orlando that focuses on type 1 diabetes. All the food is carb-counted, and it’s the only week of the year where diabetes feels “normal.”

While at the conference, we heard Dr. Ponder’s Sugar Surfing talk, and when we applied his principles, Henry was in range for 99% of the day. It was the best blood sugar day we’d had in the past 90 days.

Yesterday, while the Senate voted to continue the process of repealing or repealing and replacing healthcare, we had our Endo day. If you don’t speak diabetes, Endo day is when you meet with your endocrinologist, and in addition to the usual conversations of insulin to carb ratios, insulin sensitivity factor (more math than I had in Algebra I), there is a test, the A1C test, which is used as a general measure for how well you’re managing your diabetes.

It’s probably against the DOC (diabetes online community) to admit that I’m sometimes excited for this test, because I’ve always liked tests. I find them an interesting metric. So when I’ve been slaying carb-counting, micro-dosing insulin, not sleeping through the night, and setting a timer for a real pre-bolus, I’m excited for the A1C.

Not this time. The Dexcom alarm would predictably go off over 220, and my husband and I would look at each other, willing the other to act first, to slog upstairs and deliver what felt like the hundredth dose of insulin that day. His high blood sugars made me feel helpless, and because I don’t like to feel helpless, it was easier to turn that feeling into apathy. I slept through high alarms. When we went out to eat, I didn’t try to hide the option of french fries on the kids’ menus. I was certain his A1C would be much higher, reflecting our summer vacation mode and my burnout.

Instead, it was his lowest A1C yet, (and not because of lows). The A1C reflected our recent change to sugar surfing, “working the line,” as Dr. Ponder says. It reflected the fact that I’m no longer afraid to call a restaurant meal 100 carbs, to use the fancy pump settings like temp basal and combo bolus. To rage bolus, just a little.

Our endo stayed and talked with us half an hour after the office closed. Guess what we didn’t talk about? His A1C. As we were leaving, the janitors were gathering trash from the waiting room and neatly stacking the magazines. The lights over reception were dark.

On the hour and half drive home, I listened to NPR report on the Senate vote. I thought of all the things an A1C doesn’t reflect: the anxiety I feel about whether my son will be denied coverage, how he will afford his insulin when he’s older, if he will be forced into a career he doesn’t want because of private insurance—the privilege of that thought.

I didn’t know it yet, but the Endo had made two changes to his basal, and Henry’s blood sugar never dipped low nor rose above 115 all night. I only had to wake up and glance at my phone for the numbers. It was almost like sleeping through the night. Almost.

A Week To Break A Heart

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This week I read about a government official who implied that only bad people get pre-existing conditions because they aren’t doing the “right thing.” Another representative indicated that people with pre-existing conditions are lazy and should do more to take care of their conditions.

Then, the house of representatives passed a bill to weaken the protections of pre-existing conditions.

This afternoon, while unpacking my son’s backpack I came across this.

“We dream of a world where people are healthy.”

Yes, we do dream of this, but in a world where three-year-old boys get type 1 diabetes, teenagers get cancer, and infants are born with heart defects, I think it’s safe to say that pre-existing is existing.

 

Hidden Costs

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No matter what side of the political fence you find yourself on, one thing is certain: there’s political talk in the air. In our house, we listen to NPR in the morning as we get ready for school and work, and we talk about politics at dinner. Our kids go to an excellent public school and hear about politics on CNN 10 and through their weekly Scholastic Readers. Their classes even held mock elections this past November.

Our kids have been asking a lot of questions about politics. They want to know what a bill is, how to become president, and who makes the laws. They want to know what laws will affect us and their friends.

Because our son has type 1 diabetes, we’ve been following the repeal and replace ACA discussion closely. The ACA isn’t perfect, but it’s pretty clear that the ACA has provided access to healthcare for people who have been living without adequate coverage.

We are lucky enough to have private health insurance, but pre-existing conditions, lifetime maximums, and the ability for our son to stay on our insurance until he’s 26 are important issues for us, so we’ve been writing and calling our representatives to tell them about our story and encourage them to protect access to healthcare for all. Henry and his sister wanted to help, so they wrote a post card.

Explaining complicated issues that our country can’t agree on to a child is tricky, because the parent needs to explain the issue fairly and clearly, illustrating something complex in a way the child will understand. To most kids, the issue is pretty simple: sick people need medicine, so they should get the medicine. How do you talk about profits, risk-pools, or poverty begetting poverty?

Like I said, we’re lucky to have the insurance we do. In 2016, I decided to quietly keep track of the money we spent caring for diabetes, but I stopped counting when we crossed over $2,000 in May. I didn’t tell anyone about the total. I stopped because the figure made me feel fortunate and guilty at the same time. For many families with type 1 diabetes $2,000 may be a monthly or bi-monthly cost. Without the ACA, these costs would be higher.

A few days ago, Henry brought his papa $35 dollars, which he’d been saving for a really cool Lego set, and said, “Here papa, take this. I know health care is expensive.” Pretty simple: when someone needs something, you give it to them.

Perspective

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As of today, he’s been in Kindergarten for 100 days.

Sure it’s a 100 days of school, but the 100 test strips are only 10 days of type 1 diabetes care. So that means…

100 finger pokes

$140 dollars (without health insurance) of test strips

4 site changes

1 continuous glucose monitor change

0 nights of uninterrupted sleep

333 highest blood glucose

47 lowest blood glucose

2017 Resolutions

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As Henry delighted in putting together his 734 piece “expert level” winter train Lego set, we had to interrupt him and test for lows multiple times. He hung out in the 60s and 70s no matter how many glucose tabs and airheads we threw at the lows.

In fact, it wasn’t until my husband asked, “Do you think the Legos are making him low?” that I put two and two together. I remembered that about six months ago Henry worked most of the morning on a complex Lego set and he remained low most of the time. Then I recalled reading about 504’s, and many parents explained that the mental energy of standardized tests often drove their children low, likening complex mental activities to a kind of sugar-guzzling exercise.

While I don’t make specific resolutions at the start of the year, I do believe in rededicating and refocusing attention and efforts periodically.

While Henry happily put his Lego set together in a state of mild hypoglycemia, I resolved to pay attention, not only to how food and activities affect his blood sugar, but to how our law makers handle healthcare.

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In a few days, a new administration will take office, and one of the first items that will be considered is the repeal of the Affordable Care Act (ACA). I’m not sure how health and healing, particularly the health of children, got political, but it is, and it shouldn’t be. I’m not a Pollyanna, I understand it’s really about money; a few phone calls to an insurance company to discuss $1.40 test strips makes this very clear.

I understand that the ACA is not perfect. Thankfully, we have private insurance, and since the ACA passed a few years ago, our premiums and co-pays have increased. We pay more for our coverage, which appears to be increasingly less. However, it means that people like Henry, who came into the world with a quarter of a million dollar hospital bill for a stay in the NICU, who was diagnosed with a costly, chronic disease at three-years-old can never have a lifetime maximum. He cannot be refused for a preexisting condition, and he can stay on our insurance until he’s 26. But more importantly, the ACA provides access to health care for people who are not able to be a part of the privatized market. Imagine guessing at your blood sugar because you could only afford a test strip a day or rationing your insulin and choosing not to eat or not give insulin because you couldn’t afford it.

This morning, when the governor of my state called for a “move to one comprehensive statewide health care contract for public employees,” I was paying attention. When my House Representative was re-elected, I wrote a letter and explained the role of the ACA for people who live with a lifelong condition. I urged him to support medicare coverage of a continuous glucose monitor, and thanked him for signing the letter for the Special Diabetes Program.

In 2017, I’m paying attention. Here’s how to contact your lawmakers. Tell them what’s important to you. Make them pay attention.

Hard Questions on World Diabetes Day, and Everyday

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November 14th is World Diabetes Day (WDD), a day created by the International Diabetes Federation to bring awareness to the growing concerns surrounding type 1 and type 2 diabetes. Last year, I recognized WWD with the 2015 Type 1 Diabetes Index.  This year, some of those numbers have grown.

 

My son is in his second week of participating in a sport, so I’m new to managing blood sugars during organized physical activities. During his first week of practice, I sat watching the CGM (constant glucose monitor) as it read 120 with an arrow straight down, then the next read out, five minutes later, was 90 with two arrows down. At practice this week, I disconnected his pump, hoping to avoid the rapid drop.

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As I held his makeshift pancreas in my hand, I looked up and saw grandparents taking short videos, parents cheering kids on, siblings sitting through practice, drinking from juice boxes, eating unmeasured food. In one hand was my son’s insulin pump, the other his CGM receiver, and with all my willpower, telepathically, I was willing his blood sugar not to drop any lower, but it was 98 with an arrow down. As I rushed downstairs to give him a glucose tab, it struck me, once again, how different my experience of the ordinary often is, usually because I’m thinking about some difficult diabetes question or trying to do diabetes math, which is impossible, by the way.

For World Diabetes Day 2016, I’m sharing a few of the typical questions I have throughout any given day.

If he’s eating 45 carbs for dinner, with lots of protein, but not much fat, is 1.75 units of insulin enough to cover the meal?

Should I wait 5 more minutes to see if one glucose tab is enough to bring his blood sugar up?

Will the school nurse think I’m overprotective if I call? I just dropped him off at school with 2 units of insulin on board, a glucose tab in his mouth, and he’s 79 with an arrow down. Yes, call. Are you crazy? Why would you not call and tell her this?

Did I give him enough insulin?

Did I give him too much insulin?

Should I explain to the man who just picked up his kid and moved him to the other side of the pool after seeing the medical devices on my son that my son is not dangerous or contagious? Should I tell him it’s OK to ask questions, but not to stare and ostracize?

OK, the packaged pasta says 2/3 cup of dry pasta is 44 carbs. Hmmm. How is dry pasta a useful nutrition fact? Do people actually eat dried pasta?

Why do I feel guilty and lucky at the same time because my son has access to insulin and others don’t?

When I walk in his bedroom this morning, will he be conscious?

Why does he eat the exact breakfast every morning and sometimes he’s 120 an hour after and other times he’s over 300? The.exact.same.breakfast.

What if Henry has kids and they get diabetes?

As I look at his CGM many hours after eating out, I wonder just what exactly is in restaurant food.

When I’m talking to a representative  from my insurance company after they’ve limited my son’s test strips and declared his Dexcom CGM out of network, and I ask this person how much my son’s life is worth, do I really expect an answer? Do I really want them to answer this question?

How will my son handle the burden of type 1 diabetes as a teenager?

Is his sister peeing more than normal? Am I?

After asking for the nutrition information at a national chain of ice cream parlors, do I push it and try to explain for a third time that I’m asking for carbohydrates, which are a very different thing from calories?

When Henry is anxious about a site change, he says, “I don’t want to have diabetes. Why do I have diabetes?” Is it enough to say, “I don’t want you to have diabetes either,” and “I don’t know.”

Those two pieces of pizza are 70 carbs. Right?

After learning of someone else in my local community is diagnosed with T1D, I wonder why the CDC is not tracking the incidence of type 1.

How will Henry respond when some of his classmates stop being curious and start being hurtful?

Sleeping in two and three hour intervals is enough, right?

November is diabetes awareness month. Please consider signing this petition that asks the CDC to start tracking the occurrence of T1D or making a donation to a diabetes organization.

Social Media for the Social Good

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“Social Media for the Social Good,” that’s how Kerri Sparling described the project, Spare a Rose Save a Child, on Stacey Simm’s February 2nd podcast, Diabetes Connections. The idea behind Spare a Rose Save a Child is simple: buy one less rose than you would have on Valentine’s Day and donate its cost. By donating $5, the cost of one rose, a child is supplied with insulin for a month.

spare-a-rose-life-for-a-child-image

Living with a chronic condition means you have to secure your oxygen mask first, but when cabin pressure is restored, there’s an awe-filled moment when you can gaze out the window at the top of clouds and be amazed that you’re in about the fourth generation of humans who’ve lived on this earth, to fly in the air, and about the third to be alive since insulin’s been discovered. It doesn’t take long to recognize that access to life-sustaining medicine shouldn’t be relegated to where you were born.

As we were being discharged after our son’s diagnosis, a hospital pharmacist sheepishly walked into our room. He was carrying a large brown paper bag, and at first I thought it was odd that he was holding groceries. I thought maybe he was on his way home to prepare dinner and just wanted to check-in with the doctor, who was going over discharge orders with us. It turns out the sack held a month’s supply of syringes, lancets, ketone test strips, alcohol pads, and two kinds of insulin. As a way of apology, he said this was one of the worst parts of his job, entering the room of a young child who had just been diagnosed with a lifelong disease and letting the family know that they’d be billed around $500 for the month’s supply of medicine and medical equipment the hospital was sending home. He then noted that we had good insurance and would be paying less than that.

And we do have good insurance. In fact, we have access to everything (medical equipment, doctors, education, medicine) that we could possibly need to take care of our son’s diabetes, but this isn’t true for the underinsured, those without insurance, and those living in developing countries. Diabetes is hard, and we have everything we need. Diabetes is hard, and it’s unthinkable for those who don’t have what they need. This Valentine’s Day instead of buying chocolate and flowers, we’re buying insulin for someone. What’s sweeter than that?

Caretaking for Two

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It’s Diabetes Awareness Month, as well as National Family Caregivers Month, so Semisweet is sharing its second guest blog, an interview with a parent caregiver, Angie Ashe, mother to Elliot and Fiona. Elliot has Arthrogryposis and Fiona has Amniotic Band Syndrome.

Elliot & Fiona

Elliot & Fiona

How would you describe your children’s conditions? 

When my first daughter Elliot was born, her physical disability was a delivery room surprise. When we adopted our younger daughter Fiona two years later, her physical disability was completely planned. Because of our experience with Elliot, my husband and I deliberately set out to find a daughter who could benefit from all the great specialists we met along the way. Elliot has Arthrogryposis, which means that her limbs did not develop properly in utero. She has very limited muscle and range of motion in her limbs. She also happens to be non-verbal. Fiona has Amniotic Band Syndrome, which resulted in an underdeveloped foot that had to be amputated and missing digits. She also happens to talk non-stop. Neither girls require any medication or special diets. Their needs are mostly physical.

What care for your children is required, and how do you and your partner divide this care?

As their caretaker, I do a lot of heavy lifting. I don’t mean that metaphorically. I lift a 45 pound 5-year-old (who often fights being carried if it means she’s going to bed or the bath), a 35 pound four-year-old, and a wheelchair in and out of my trunk all the time. It took some getting used to, but I have a pretty strong back and no need for a gym membership. Most parents get the privilege of fighting with their kids, telling them they’re too old to be carried. I get the privilege of helping my five-year-old walk around in her leg braces, a feat we were never sure she’d accomplish. I’ll take all the work involved in helping her up and down the structure at the playground just to hear her giggle when she goes down the slide.

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My husband Rob and I both work in our family. He works full-time as a Television Editor. I work as a Children’s Librarian, but I only work part-time for the kids. Because of my schedule, I am the parent who takes the girls to every doctor and hospital appointment. When your children are as complicated as my children, that equals a lot of appointments. There’s the lower orthopedic surgeon, the upper orthopedic surgeon, the cardiologist, the neurologist, the neurosurgeon, the urologist, the ophthalmologist, the developmental pediatrician, and the orthotist. Let’s not forget the offices we’ve visited just for fun, like the audiologist and the optometrist. Plus, the offices all kids have to go to, like the pediatrician and dentist. In between all this, there have been many visits to the hospital’s hand clinic for nighttime splints to be made and adjusted and the casting clinic for serial casting of the legs. Plus, there are the many, many hours spent in OT, PT, speech, social skills therapy, and behavioral therapy.

Having listed all these, don’t think for a second that I dread any of this. I actually like taking my girls to their appointments. I show up early with snacks and games for everyone. I’m that mom. If this is going to be their life, it’s my duty as their caregiver to make it fun. My kids know everyone wherever we go. The staff at all the offices are their buddies. My girls may be scared of the blood pressure cuff, but they are not scared of the nurse holding it. My job is to make sure that they know they are surrounded by friends at all these appointments. I like to think that I am surrounded by friends too. Since I have no time to just hang out with friends, I have made many of the people who work with my daughters my friends over the years.

Just because my husband misses most of their appointments does not at all mean that he is hands-off. My luxury in our family is that I do not have to deal with insurance and bills. I have never called our insurance, ever. I’m quite proud of that. It’s freeing to show up at all these appointments and never worry about how they are going to be dealt with through insurance. I’ve had times where an employee at the front desk has asked me an insurance question, and I just smile and declare that I haven’t a clue. I have to reserve so much of my brain power for all their medical info that I rather enjoy saving no space for insurance mumbo jumbo. I believe my husband likes having an important role in our medical journeys as well. I completely trust him to do all this, and he does a spectacular job. I pride myself on being an intelligent woman, but there is a beauty in being blissfully ignorant when it comes to all the back and forth between insurance. For the sake of honesty, I’ll admit that I’ve written a few letters of appeal, but it’s more fun to believe that I am free of all insurance worry.

road

Describe a caregiver technique you and your partner do differently.

One major way that my husband differs from me is that he is a homebody, and I don’t sit still well. I like to take the girls to the gym or park, if we are bored at home. He, on the other hand, never gets bored at home. I think both qualities are good to have in a family. While I can get anxious that Elliot is not getting enough exercise, I can see that bumming around the house is something that she needs sometimes. She works a lot in therapy and school, and he helps remind me that it is not going to hurt her to do nothing for a little while.

There is one area in Elliot’s life that I have never trusted my husband: her splints. Elliot got her first pair of wrist splints in the NICU. They are meant to hold her wrists in an ideal position when she slept. When she was smaller, the splints were actually putting a little pressure on her wrists, trying to help them move into a better spot. Now, they just maintain. She’s achieved a lot with splinting. If they are strapped on too tight, they can create pressure sores. If they are too loose, they will offer little benefit. For five years, I have tiptoed into Elliot’s room after she’s gone to sleep and quietly strapped each splint on. I acknowledge this is my own form of craziness, and, therefore, do not resent my husband for knowing nothing about her splints.

One big thing that I don’t think a lot of people realize about my life as my daughters’ caretaker is that it involves a lot of medical decision-making. You see, there is not one pattern to follow for any of this. There are tons of surgeries out there and tons of opinions on all of them. Every single choice I have made on my daughter’s behalf I have heard someone talk negatively about it in an online support group. The boots with the bar that helped my daughter’s club feet, those are awful, don’t work at all, should never be used on a child with my daughter’s condition. I thank goodness all the time that I have excellent research skills as a librarian and know better than to believe everything I read online. Out of the plethora of treatments, we have to pick some (or none, as some choose to do), and we have to do our best to be happy with our decisions. Luckily, my husband and I make a great team when it comes to these decisions. We’ve talked about these procedures endlessly, and we meet in the same place when it comes to our daughters’ care.

Elliot started kindergarten this fall, and I can happily say that I handed off some of my caretaker duties to her teacher and aides at school. She is part of an amazing special ed program in our city, and her transition to longer school days could not have happened at a better time. Five years of early interventions is a lot. Five years of working my butt off. Adding Fiona to the mix almost two years ago sped our household up even more. I was honestly exhausted. Right now, I am grateful that I can lay off Elliot a bit and let her just relax when she comes home from school. I still have a hard time leaving her be, but I’m getting better at it. I stretched her 6 times a day for years. I bribed her with Goldfish to take tiny steps through the aisles of Target for years. Now, I let her sit and play iPad. Nothing else. It’s nice. She’s learning to communicate with us through that iPad now too, so don’t knock the iPad time.

I’m going to be my daughters’ caretaker for life. Fiona will leave our nest one day, but Elliot likely never will. My vision of my future has changed over the years, but it’s not a bad thing. Elliot loves the ocean. She might be my key to getting that little retirement house at the beach that I always dreamed of. My job as her caretaker now is to make sure that she grows up to be someone I will love spending every day with. Elliot, Rob, and I will rock in our rocking chairs, watching the ocean, waiting for Fiona to visit and tell us of all her adventures. That doesn’t sound bad at all.

family

The Ashe Family

2015 Type 1 Diabetes Index

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November 14th is World Diabetes Day. November 14th marks the 618th day our family has been living with type 1 diabetes. To be sure, it’s difficult to measure or assess the emotional toll of living with diabetes, but there are ways we can measure the impact of living with type 1 diabetes. Here’s a look at Henry’s 2015 type 1 diabetes index. At the end of the blog, there’s a video where some of these numbers are juxtaposed to our everyday life, creating just a glimpse into the emotional side of living with type 1 diabetes.

Number of days Henry’s been living with type 1 diabetes: 618

Number of vials of insulin Henry’s used since diagnosis: 26

Estimated cost of 100 units of recombinant insulin without insurance coverage: $215

Range of a normal blood glucose: 80-120

Number of people living in the U.S. with type 1: 1,250,000

Estimated number of finger pokes Henry has had to check his blood glucose: 7,400

Number of insulin pump site changes Henry has had: 280

Estimated cost of an insulin pump without insurance: $7,000

Estimated yearly cost of pump supplies: $1,500

Chance of developing T1D if no relatives have the disease: .4%

Chance of developing T1D if a first degree relative has T1D: 10-20%

Average number of years T1D takes off of a male and female life (respectively): 11, 13

Number of site changes Henry’s had for his CGM (continuos glucose monitor): 83

Estimated yearly costs of a CGM without insurance: $2,800

Number diabetes related check-ups Henry’s had: 9

Number of miles on the road to Henry’s diabetes appointments: 1,786

Range of non-diabetic hemoglobin A1C: 4-5.6

Range of Henry’s hemoglobin A1C’s since diagnosis: 7.5, 8.1, 7.2, 7.3, 7.0, 7.5, 7.1

Chance someone will die of T1D within 25 years of diagnosis: 7%

Number of Henry’s hospitalizations and emergency room visits related to T1D: 5

Number of nights of uninterrupted sleep in Henry’s house since diagnosis: 0

Amy’s Diagnosis Story

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Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing “Amy’s Diagnosis Story” in her own words.

Amy, diagnosed at age 29, February 2004

It was in Manhattan in the fall of 2003 when I had dinner with my good friend Sam who was diabetic as a result of a bout of pancreatitis a few years before. It was in jest that we decided to check my blood sugar. We’d had steak and potatoes and bread and several glasses of red wine, followed by a rich chocolate cake with sugary espresso. We were laughing at how even a “normal” pancreas would probably be overloaded by a meal that rich, but neither of us expected anything out of the ordinary. My blood sugar came back at 195. We chalked it up to the rich meal we had just eaten and laughed it off, and I tried to forget about it.

Amy a couple months prior to diagnosis

Amy (center) a couple months prior to diagnosis

In the next few months my life underwent a major transition when, after years of struggling to get control, I finally gave up drinking altogether. I had my first sober Christmas and New Years and was taking it day by day in a whole new reality. By February I had lost 20 pounds, which I was thrilled about and assumed was a result of a whole lot of beer weight melting off. Sometime in the middle of the month I started noticing fatigue and a persistent thirst and I very quickly lost another 10 pounds. Then one day on the way to work I literally had to stop on the subway stairs because I was too tired to make it up to the street. I knew in my gut that something was really wrong, and I flashed back to the night with Sam and the peculiar blood sugar. I was terrified to find out what might be going on. I had no health insurance, no money, and my entire family was 2,500 miles away, but the next morning I walked to the urgent care clinic on Atlantic Avenue and signed in to see the doctor.

I was shown to an examination room and was joined by a nurse who asked me what was happening. When I told her my symptoms and about the sugar of 195, she got the doctor to come in. The doctor assured me that I shouldn’t worry, that a diagnosis of type 1 diabetes in someone my age of 29 was very unusual and that the 195 had probably been a meter error. But just to get peace of mind we started by checking my sugar with their meter. When the meter read 305, my heart stopped. The doctor wrote me a note on her prescription pad and told me to go across the street to Long Island College Hospital emergency room and give them her note, with instructions to put me at the top of the list and get me admitted right away. Within an hour I was in the intensive care unit.

A week later I was sent home 25 pounds heavier armed with needles, insulin, a glucometer, and no idea how to adjust to life as a diabetic. My mom flew in and stayed with me for a few weeks as we learned to count carbs, calculate insulin doses, and wake up to check 3 am sugars. Leaving my apartment felt like a major undertaking (with a cooler for my insulin in tow) and I will never forget the first low blood sugar with the sweating, disorientation, and loss of brain power leaving me helpless. I was unsure that I would ever again feel care free, independent, young, or healthy.

Although being newly sober when I was diagnosed was overwhelming, I now see it as a blessing. Getting sober requires surrender to a new way of living and complete willingness to accept what comes as a result. The spiritual strength that I was finding in recovery was key in transitioning to life with diabetes. Now, 12 years after diagnosis and 12 years sober I see the two as one connected event that taught me to cherish my health, to be grateful for each day, and to strive to live a purposeful and joyful life. Managing diabetes can feel like a full time job, yet I have been able to manage it through graduate school, a career, and two pregnancies and healthy babies.

amy marriage

8 years after diagnosis