Between Avalanches

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.

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A Week To Break A Heart

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.

 

Half His Life

Mr. Neideffer, my Algebra II teacher, tapped his knuckles loudly on the board. He looked at me expectantly, prompting me with more loud taps against the blackboard, “Well, Rhonda, what’s the answer?”

Rhonda is my mom’s name, and some 25 years ago, Mr. Neideffer had my mother as a student in Algebra II. He called me Rhonda so often that I eventually stopped correcting him and just answered to my mother’s name.

On this day, we were studying direct and inverse proportions, and while I didn’t know the answer to his question, the irony of the lesson was not lost on me. Instead of focusing on Mr. Neideffer’s question, I thought about the age difference between my mother and me. When I turned 25, my mom would be 50, and I would have been alive half as long as she had been. When I turned 50, my mom would be 75, and I would have been alive three-fourths of the time as she had been. We would always be 25 years apart, but as we got older (an increase) the difference between how long we’d lived on the earth would decrease.

In the diabetes community, people often celebrate their diaversary (diagnosis + anniversary). While we talk about it, we don’t celebrate it yet, as we’re waiting to see how Henry wants to mark this day.

Since the invention of insulin, every diaversay is no doubt a marvel; however, I can’t help but feel somewhat sad because it marks another year of living with a chronic disease, which is hard work that we do everyday. Yet, another date makes me sadder: December 15, 2016.

This day marks the midpoint, where Henry’s lived as many days with diabetes as without. Everyday after December 15th is an inverse proportion: the amount of time he didn’t have diabetes decreases compared to the time he will have it.

Not uncommonly, someone will tell me that we’re lucky Henry got type 1 diabetes so young because he won’t know a different life. While I want to believe this, I can’t. I think of the greater proportion of time his blood vessels will be exposed to high blood sugars, the greater likelihood of complications. If I got diabetes right now, I’d be in my 70s before I’d have lived half my life with T1D. Henry turned 6 this year.

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When I become too forlorn about the burden of type 1, and what that means for my son, I remind myself that the miracle is he turned 6—that 96 years ago, before insulin, people with type 1 could expect to live 2-3 years after diagnosis. The miracle is everyday after January 11, 1922 when insulin was first delivered to a person with T1D, and that miracle includes today and the one after.

LOVE IS ON 2016 Challenge

I just returned from giving my son a juice box in his sleep. His blood sugar was low, 68, and about half an hour earlier it was 62. My son is 6, and he has type 1 diabetes. Right now, I’m his pancreas. I count carbs, estimate how the types of foods he eats will interact with the amount of insulin I give him. I think about his blood sugar at least once every waking hour. I even dream about blood sugar numbers.

However, this won’t always be the case. This is Henry’s diabetes, not mine. Little by little, I’ll hand over the tools and knowledge he’ll need to keep himself alive and healthy. Like a parent teaching a child to drive, we’ll circle the block, drive around town, and eventually he’ll back out of the driveway alone.

In the future, when Henry is his own pancreas, I won’t know about every low, how much insulin he gave himself, nor what he ate. He’ll figure out this diabetes management thing from us (from all the years of talk and practice) but also from other places, like the diabetes online community (DOC). When he’s older, he won’t share all the challenges he has to endure. He’ll rightly look to other people with T1D, and thankfully, the DOC offers amazing resources: personal blogs, research, nonprofits, and communities, like Beyond Type 1.

Beyond Type 1 is an exciting organization that aims “to be provocative, inclusive and disruptive: putting a face on this disease, clearing up misunderstandings about who is affected by T1D and eradicating the stigma that comes from living with a chronic disease. [Beyond Type 1 recognizes] there is a different narrative to be told: that of a strong empowered community living a powerful life beyond the diagnosis” (from www.beyondtype1.org). Unlike some places on the internet, Beyond Type 1 focuses on being empowered and living beyond a T1D diagnosis.

I am beyond thankful that Nick Jonas and celebrity chef, Sam Talbot, spoke up and out about their T1D, and helped found Beyond Type 1. I’m glad there are a bunch of amazing people working at Beyond Type 1 to create a positive community with many resources for education, access, and empowerment.

Right now, Beyond Type 1 is in a fund raising challenge, the Revlon LOVE IS ON 2016 challenge. For the organization that raises the most money, Revlon will donate another $1 million dollars. Please consider making a donation in any amount. We just did.

@beyondtype1 shared Henry's story today. #t1d #diabetes

A post shared by Semisweet (@semisweett1d) on

 

 

 

Semisweet Turns 1

A little over a week ago, I sat in the audience of a lecture, “Prevention and Treatment: From Probiotics to Immunotherapy,” given by the current president of the American Diabetes Association (ADA), Desmond Schatz, MD at the Friends for Life conference in Orlando, FL.

The talk was a speedy assessment of what is known about type 1 diabetes today, and to anyone who follows the current research, it’s no surprise that what we know is actually how much we don’t know. A few minutes into the talk, Dr. Schatz kept repeating the phrase, “a need for urgency,” as in, “There is a need for urgency for research participation” and, “There is a need for urgency for funding models to change.” Dr. Schatz then acknowledged that everyone in the room understood the need for urgency because we either had diabetes or loved someone who had diabetes.

He then gave some statistics in the talk.

In Finland, a country with one of the highest instances of T1D, 1 in 123 people has type 1.

In the United States, about 1 in 300 people has type 1.

Worldwide, new cases of type 1 diabetes double every 20 years. That’s a new urgency: an autoimmune disease with no known trigger and no known cure doubles in occurrence in a little less than a generation.

When our son was diagnosed with type 1 diabetes, with no family history, the urgency was new to us. After a while, we looked up from our life that now included carb counting, medical devices, glucagon kits, needles, pokes, and insulin, to see that the urgency is spreading like a slow avalanche.

As Semisweet closes its first year in the DOC, and opens its second, the new urgency is why we share our stories. The numbers of T1D are only growing, but now, T1D is no longer a number for us, it’s a story, it’s part of our life. Stories are advocacy.

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Friends for Life Banquet 2016

This Guy & His Sign

Hell hath no fury like a sleep-deprived, insurance battling, carb-guesstimating parent of a T1D kid. So when this guy posts this sign in his aptly named restaurant, Mike’s Pig Pen, parents get even and educate.

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After the Facebook page for Mike’s Pig Pen was taken down, another popped up.

Local news outlets were contacted about covering the story.

Lots of one star reviews on Yelp! appeared.

The phone number for Mike’s Pig Pen appeared online, with the suggestion that the “squeal like a pig” scene from Deliverance be played when someone answered.

Mike’s expired domain name, http://www.mikespigpen.com, was purchased and now it reroutes to the American Diabetes Association.

The DOC (Diabetes Online Community) reacted and responded.

Locals defended him. People within the Type 1 community suggested that the outrage was too extreme.

Mike apologized.

Dust-ups like this happen when diabetes (type 1 and type 2) enters the picture. Only the players change: it can involve Cross-Fit, American Girl Dolls, and the list will continue.

I’m not sure that someone who openly practices discrimination (and thinks that diabetes is spread through blood contact) ever gets educated, whether it’s Mike, the customer who complained, the local newspaper editor who says that attacking Mike over the sign “is equivalent to bombing Main Street,” or the 100’s of people on social media who express outrage over having their meal ruined because they have to see a needle.

What I do know is that the sign, and all those who agree with its sentiments, that think people with a disability should be removed from public view, are a reminder that the fight is real. There’s a reason for advocacy and education.

 

I Wish People Knew That Diabetes…

Kelly Kunik, who blogs at Diabetesaliciousness, created the hashtag  #IWishPeopleKnewThatDiabetes, and the idea is that on April 20th of every year people share what they’d like others to know about living with diabetes so that no one feels alone on the T1D journey and that others are educated about a life with type 1.

It’s very similar to the project #IWishMyTeacherKnew, and last year over 17 millionTwitter impressions were created with #IWishPeopleKnewThatDiabetes. Sharing fears, hopes, and struggles as they relate to a life with type 1 is certainly raw, but also cathartic. It’s been two years since type one entered our home, and the longer it’s around, I realize that T1D will touch almost every aspect of our lives, but the real challenge is to learn that it will touch every aspect of our lives, and to move on despite it.

When our son was diagnosed with type 1 diabetes I knew that we didn’t do anything to cause it, that he would need to use insulin for the rest of his life, and lows and highs were dangerous. Now, I know more about diabetes, and in the spirit of advocacy, I’m sharing, in no particular order, ten things I wish people knew that diabetes…

  1. I wish people knew that diabetes makes me sad/upset/frustrated/exasperated when I’m at the grocery store.
  2.  I wish people knew that diabetes is often why I’m looking at my phone. I’m checking my son’s blood sugar remotely so that I can check back in on the task at hand.
  3. I wish people knew that diabetes occupies about an hour and half of my time per day, about $200 a month, and we’re lucky to have time and good insurance.
  4. I wish people knew that diabetes means I fear that one day my son will attempt to take his own life by purposefully administering too much insluin.
  5. I wish people knew that diabetes makes me monitor my other child’s water intake, weight, bathroom habits, and moods because I’m afraid that she too will develop type one diabetes.
  6. I wish people knew that diabetes forces me to sometimes trust people I don’t know very well with my son’s literal life, then after he learns to care for his own diabetes, I will have to trust a teenager to make mostly good and responsible life and death decisions multiple times a day, more or less consistently.
  7. I wish people knew that diabetes makes me afraid I might outlive my son.
  8. I wish people knew that diabetes is why I haven’t had a good night’s sleep in more than two years.
  9. I wish people knew that diabetes means almost every week I read about someone who died because they had the same disease as my son.
  10. I wish people knew that diabetes means I have to choose to believe that living with a chronic disease makes people stronger and not weaker, because that’s the way forward.

Please consider sharing your thoughts using the hashtag  #IWishPeopleKnewThatDiabetes on social media on April 20th.

#Teampancreas

T1D is a family disease. Our family has learned how to recognize and treat a low blood sugar. We make decisions about what to eat and when. We monitor blood sugars 24 hours a day. Henry’s sister also helps. She watches his numbers while they play and distracts Henry during site changes.

Part of Henry’s pancreas may not be functioning, but he’s got a village of support replicating (as close as humanly possible) what his beta cells once did.

Beyond Type 1 is celebrating #Who Do You Love? on their Instagram wall. Of course, Ava is a great addition to #teampancreas.When it comes to diabetes, there’s not a lot to celebrate; however, the way family and friends rally with support and understanding is something to honor.

Names Are Hard

The ADA’s 2016 Standards of Medical Care in Diabetes recently shifted its language to match the ADA’s position that diabetes does not define people, “the word ‘diabetic’ will no longer be used when referring to individuals with diabetes in the ‘Standards of Medical Care in Diabetes.’ The ADA will continue to use the term ‘diabetic’ as an adjective for complications related to diabetes (e.g., diabetic retinopathy) (54.)'” This means that “diabetes” is now used to refer to the person who has it, instead of “diabetic;” for example, “My sister has diabetes,” not, “my sister is a diabetic.”

The name shift seems simple, but it’s packed with emotions, implications, and for some, even anger. I wrote a piece, Diabetic v. Diabetes, shortly after the ADA published the 2016 Standards of Medical Care in Diabetes, which explained the name change. When I linked to the article on Semisweet’s Facebook page, within seconds, the first comment was, “This is stupid.” Beyond Type 1 featured the article, and it garnered some healthy debate on the Beyond Type 1 Facebook page as well.

Some people see diabetic v. diabetes as splitting hairs or unnecessary political correctness. When I encounter the people who prefer to be called “diabetic,” or at least voice a strong and angry opinion against those asking to be called, “person with diabetes,” I respect their right to be called “diabetic.” In general, it seems these people have lived with the disease for many years— years when the battle was greater because technology wasn’t as advanced and understanding was scarer. Usually, these people are adults; however, children are more sensitive to language, labels, and their implications. In fact, we’re all probably not too far removed from that hateful comment or name someone hurled at us on the playground.

I’m the parent of someone who has diabetes. I couldn’t protect my son from getting diabetes, but I can try to protect him from the implications of being called “a diabetic.” He’s not even in kindergarten yet, and already kids his age have told him he, “can’t eat a certain food because [he’s] diabetic.” He’s been told he can’t play a certain sport because he’s “diabetic.” A neighbor kid didn’t want him in her yard because he’s “diabetic.” He’s brought home treats, like half a muffin or cupcake, from school because he didn’t eat it when the other kids did. We don’t make certain foods off limits, but he’s heard kids his own age tell him what he can’t eat. I wonder what he’s thinking as he watches his classmates eat their treats. He can eat that cupcake or cookie because he has diabetes, but he’s inherited the stereotype that he can’t, because he’s “a diabetic.”

The governing associations like American Diabetes Association are changing their language, and I think this is because our perception and understanding of diabetes is changing. To be “a diabetic” was a certain death sentence 94 years ago. After insulin, to be “a diabetic” meant doctors predicted vastly shorter lifespans; fear and misunderstanding from teachers, relatives, and the larger medical community impacted people’s lives negatively. Women with T1D were told they could not and should not have children (case in point, Steel Magnolias).

In this era of better treatment, people with diabetes can live normal lifespans with fewer complications. As more and more people live longer and better with T1D, we’re starting to understand that living with a chronic disease or condition, like diabetes, has impacts on our emotional health, romantic relationships, and mental health. Having diabetes, means we can talk about this, and if we talk about being “diabetic” versus living with diabetes, there’s a simple paradigm shift at work: a limited life vs. a limitless life.

In images, the paradigm shift looks like this.

Below is the picture of a child who’s just been given a shot of insulin for the first time in 1922, and he’s starting to wake up from DKA. He was in a Canadian hospital with a ward for diabetic children. Just weeks before, his parents sat at his literal death bed.

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photo source: Library and Archives Canada

He’s a picture of 4 time Olympian, Kris Freeman. He happens to have Type 1. In the photo, he’s training for another race and is wearing an insulin pump, Omnipod, on his arm.

In both pictures, we can see the life that insulin makes possible, and what’s harder to discern, but still visible, are the implications of being diabetic versus having diabetes.

Being diabetic once meant limitations, and yes, having diabetes requires my son to make sacrifices and take extra steps, but being a person with diabetes puts the focus on personhood. Thankfully, we’re living in an age when having diabetes means it’s a conversation about what we can do instead of what we can’t, and that’s ultimately the difference between diabetes and diabetic.

 

Social Media for the Social Good

“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.

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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?