Christmas List

Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.

As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.

Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.

For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.

A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.

Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?

Me: Yeah, I guess so. Is that something you really want?

Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?

Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.

(long silence, Henry regards the back of the book)

img_1606

Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?

Me: Well, some people say yes, and some people say no.

Henry: So, is diabetes a disease?

Me: I think you’re the person who gets to decide that. So, what do you think?

Henry: I think diabetes is just diabetes.

 

Advertisements

Insulin Pump Meets Atlantic Ocean

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

  1. Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
  2.  The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.
IMG_9835

Opening secured with gaff tape (upper middle)

 

 

 

 

 

 

 

 

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)

IMG_9836

rocking the SPIbelt

4. Hang the d-bag from the sun shelter and enjoy a preserved site and pump.

Teacher, Caregiver, Nurse, Friend, and Advocate

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who will share their experiences of learning about Type 1 and managing it in a preschool classroom. “Teacher, Caregiver, Nurse, Friend, and Advocate” is by Alexis Johansen.


Diabetes. A word you rarely hear when going through college as an education major. You discuss behavior and disability interventions, teaching strategies, classroom management, and anything else that will prepare you to become a successful classroom teacher.

However, I heard “diabetes” entering my second year of teaching. My co-teacher and I were told we were going to have a child who was recently diagnosed with Type 1 Diabetes in our classroom. I cannot speak for my co-teacher, but my stomach felt very uneasy. I was worried to take on such a huge role with something I knew very little about. Many thoughts ran through my head. How do I care for a child with diabetes? Will I know what I am doing? How are we supposed to keep him safe? And most of all, how do I give him 100% of my care when I have 19 other 4 and 5 year-olds who need the same?

Unlike many public primary and secondary schools, preschools are not usually staffed with nurses, so my co-teacher and I were going to take on the nurse roll. We were in charge of keeping our little friend safe, and really when it comes down to it, alive. His parents put their trust in us to care for their child, while they themselves were still learning about caring for Type 1 Diabetes.

Not only did we have to take on this “nurse” and care giver roll, but we also had to learn to balance diabetes and the rest of the class including Henry. We were still the teachers, we were still Henry’s teachers.

Fast forward two years later, as I near the end of my time with my sweet little Henry, and all the care is now routine. But that wasn’t always the case. I think back to the first couple weeks of school, when we were learning and reading about Type 1 Diabetes. For instance, a typical day for all involved includes the following (keep in mind there is no such thing as a typical day in the diabetes world🙂

  • Between 5-10 finger pricks a day
  • Delivering insulin every day and multiple times a day
  • Counting carbs for lunch, snack, or a special cooking activity
  • Doing a pre-bolus (insuin given before a meal) for lunch along with a combo bolus (insulin given over a duration for high carb and fat foods like pizza)
  • Giving rescue carbs (glucose tabs or juice box for a low at any given point)
  • Correcting a high with an EZBG (more insulin) multiple times during the day
  • Communication with parents via group text, emails, phone calls when needed
  • Countless checks on his monitor, our personal cell phones, or his iPod

I’d say after two years, we have this balancing act figured out pretty well. There are still times where I find myself explaining to another 5 year old what a glucose tab tastes like (a gigantic smartie) or why Henry gets to have a juice box or cheese stick at random times during the day. This is all part of the balancing act. As a class we all come together to accept diabetes as part of OUR norm. This is just part of our day. The kids see us do blood checks, give rescue carbs, and give more attention to Henry at some parts of the day. But do you know what? They don’t think twice about it. They may ask a question or two, but curiosity is what makes our children learn and grow.

As I sit here typing this post, constantly checking my phone to see what his numbers are during rest time, ready to text my staff at any point, it makes realize that I have come to many conclusions and have my own thoughts about diabetes.

First of all, I love FREE FOODS (a no carb food)! The best food there is when you don’t have count carbs, knowing Henry loves them as well. To this day, my heart will always skip a little beat when I see double arrows down on his CGM (continuos glucose monitor). Pizza day is a bittersweet because I know there will always be a high and then there will most likely be a low. Exit signs, pointing with their arrows, will always remind me of Henry and his CGM (a devise used to read his blood glucose with arrows showing which direction his blood sugar is headed). Lastly, I thought Type 1 Diabetes was going to diminish my ability to teach the class, but really it made me the best teacher, caregiver, nurse, friend, and advocate that I could possibly be.

I will not look back and remember the scary lows or the difficult math (not my strong point) when it comes to figuring out carbs in a given meal or treat. I will not look back on the extra time it took to try and fully understand Type 1 Diabetes. I WILL look back and remember that little boy who took every finger prick like a champ, who made lows not so scary, who gave me the giggles when I was stressed out, who was so excited to see his blood glucose numbers (when sometimes I was dreading it), who, in all reality, gave me a whole new outlook on life. No, I will not remember Henry as the child we had with Type 1 Diabetes. I will simply just remember him as my sweet little Henry. A strong little boy who didn’t let diabetes define who he is.

exit signAlexis Johansen teaches in the 4 and 5 year old room at the University of Northern Iowa Child Development Center with her Bachelors in Early Childhood Education. She recently just finished up her third year teaching. Alexis lives in Cedar Falls, Iowa with her newly married husband and her adorable dog that loves to cuddle! When she isn’t at school with her kiddos, she enjoys reading, running, and being crafty at home.

image1

Lexie and Henry 

When Type 1 Knocks on Preschool’s Door

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.


It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

DSC00906

Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

A New Haircut

I was that mom who waited way too long to cut her son’s curly locks. In fact, this photo, taken when Henry was 18 months old, was what shamed me into getting his fist haircut.

IMG_8311

Henry, in need of his first haircut, two years and two days before his T1D diagnosis.

You see it right? That not-so-cute blonde Bozo the Clown hairstyle.

So we got his hair cut. No big drama. He ate a sucker while the stylist cut his hair. She put a few curls in an envelope for me to keep. About every eight weeks we’d repeat the same steps: sucker, haircut, not much drama. Then Henry was diagnosed with type 1 diabetes.

Immediately after his T1D diagnosis it dawned on me that some things, like eating in a restaurant, are possible, but more difficult. But other times, suddenly, we’d be in a situation where I didn’t think T1D would be an issue (like getting a haircut), and it was.

At Henry’s first haircut after diagnosis, he wanted a sucker before climbing in the chair. I scrambled for a piece of sugar-free gum to give Henry while gesturing to the stylist not to give Henry a sucker. But Henry was insistent, he wanted a sucker. I said not now, maybe later. The stylist told me that the sucker was just “a little one” and he could “pick his flavor.” I told her Henry has type 1 diabetes and he probably shouldn’t have a sucker right now, but we’d take it for later.

The short of it is that Henry left with two balloons, several stickers, and a rapidly rising blood sugar well over 200. I left with a lot of guilt. This would be the first of many times I’d have to refuse or accept a sweet treat offered at the bank or post office. There’s no easy way to casually disclose to a well-meaning stranger that your child has a chronic condition, so the sugar treat is not a good idea in the moment. And then there’s the kid, the one with the chronic condition, listening to everything that’s said.

Now, I run those errands before I pick Henry up at preschool so I don’t have to explain anything to anyone.

These days, I let Henry’s hair get a little longer than it should (but not Bozo style) before we get it cut. Last week, I took Henry for a haircut. After the haircut, the stylist asked Henry if he’d like a sucker. I didn’t say anything. He picked out a mystery flavor for himself, and then asked if he could pick one for his sister.

As we were walking out, he handed me both suckers and said, “Give this blue one to Ava, and save mine for me when I’m low.”

Crossing a parking lot with my five-year-old, who’d just given up his treat for a future medical emergency, I felt pride and a familiar sadness. All the sudden, I realized not only will T1D always be with him, but it is shaping who he is.

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.

library and archives

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.

 

Diabetic v. Diabetes

My son was diagnosed with type 1 diabetes when he was three, so it took some time for us to master a new lexicon that had suddenly become part of our daily language: ketones, glucagon, hypoglycemia, and the list goes on. For the first few weeks after diagnosis we moped around the house, afraid to leave for fear of restaurants and grocery stores, puzzled at how to check a blood sugar in the car with a kid in a carseat. During this time, Henry had lots of questions about his “dia-bee-bees.”

Even in those early days after diagnosis, when someone referred to my son as “a diabetic” it irked me in a way I didn’t fully yet understand. When I broke the news of Henry’s diagnosis to friends and family, I closed the email with, “Henry is a healthy three-year-old boy, who also happens to have diabetes.” In those early murky days, when I was struggling to understand the difference between Lantus and Humalog, it was always clear to me that Henry was a person before he was “a diabetic.”

The 2016 Standards of Medical Care in Diabetes is out, and there’s a huge shift in the lexicon surrounding diabetes. The Summary Revisions section declares, “In alignment with the American Diabetes Association’s (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.)'”

“Diabetic” is an adjective for complications related to diabetes, not my kid. My kid is a person with diabetes. Sure, “person with diabetes” (PWD) is more awkward to say; there’s three additional syllables, and the language is obviously stretching to avoid labels, but the change in perspective can be life-enlightening.

At our house, we used to call the Fed-Ex delivery van “the pincher truck.”

IMG_8536

a pincher truck on delivery

This made total sense to Henry, who came up with the name. One day after he’d spent the night in the hospital, his parents, who’d never physically hurt him, had to hold him down 5-7 times a day and give him shots. Not only did they have to give him the shot, but they had to hold the needle in and count to three just to ensure better delivery of the insulin. Sometimes, they had to do this in his sleep. Then they started taping these pinchers (Dexcom) to his skin, and these pinchers came out of the pincher truck every month or so.

Henry’s almost two years into living with diabetes. He wears a pump and CGM (continuous glucose monitor), and he understands why. He’s also learned that sometimes toys come out of the pincher truck. He’s learning there’s never just one thing in this world. There are people, and some of those people have diabetes.

The first line of the 2016 Standards of Medical Care in Diabetes Introduction reads, “Diabetes is a complex, chronic illness requiring continuous medical care with multifactorial risk-reduction strategies beyond glycemic control. Ongoing patient self-management education and support are critical to preventing acute complications and reducing the risk of long-term complications.” That’s some heavy shit.

Here’s the subtext of that Introduction. Diabetes is a disease and a condition. Diabetes (types 1 and 2) is presenting complexities to a medical system that’s been modeled on fixing acute conditions, not managing a chronic disease across a person’s lifetime, which is why so much of the care, education, and financial burden for diabetes falls on the person and the person’s family.

My son needs strength and confidence to take the extra steps of self-care to manage his disease. At five-years-old, he’s already making sacrifices that are necessary to live a healthy life with diabetes. Those first seeds of strength and confidence come from others seeing him as a person first, not a condition.

Diabetes & Anniversaries

On January 11th, two seemingly unrelated images from the past crossed my Facebook newsfeed. The initial image, from JDRF Canada, celebrated the first injection of insulin given to a human 94 years ago on January 11, 1922. The patient was Leonard Thompson, a 14 year-old boy in a diabetic coma, what was then the end stage of type 1 diabetes. Within hours Thompson began to recover, and the discovery of insulin was immediately heralded as one of the greatest accomplishments of modern medicine. In fact, the The Nobel Prize in Physiology or Medicine was awarded to Banting and Macleod in 1923.

banting best

I’m fascinated with the medial history that surrounds T1D— both in the disease’s enigmatic nature as well as the scientists, doctors, and patients that seek to end T1D.

The second picture that crossed my newsfeed is from January 11, 2014. As a family, we were looking forward to seeing our first movie in the theatre and taking a walk downtown afterword. The songs and characters from Frozen swirled on the screen, and my daughter sat on the literal edge of her seat, holding my hand and inhaling with delight. Henry collapsed into his papa’s lap, and barely moved during the show. Since this was his first time in a theatre, I thought that maybe the light and sound were disorientating to him. I tried to make light of his grumpiness, so I took a picture of him.

movie fro

January 11th, watching Frozen;   diagnosed with T1D on March 6th

Now when I look at the picture, I see his flushed cheeks and puffy eyes, which happen when he’s had a persistent high blood sugar. The small Sprite in the cup-holder (probably the second or third soft drink he’d ever had), haunts me, and  I understand why he was lethargic during the movie and walk.

Around the time of the photo, the only symptoms he showed were irritability and lethargy. About three weeks later, my mother visited and commented on the heaviness of Henry’s morning diaper. I said, “I think he might have diabetes.”

When I said that, I didn’t really think Henry had diabetes, but I must have said it to voice an irrational fear, so the absurdity of the worry would become a talisman against its reality, like knocking on wood.

Parents of young children with type 1 diabetes often talk about the last picture of their child before diagnosis, noting the bittersweet moment. Usually, the photo shows some evidence of weight loss or lethargy, so parents beat themselves up for not knowing what was going on. On the other hand, there’s great liberty, because they didn’t know what they didn’t know— the ceaseless, worrisome nature of type 1 diabetes— a paradox  photo of a really sick kid in a last moment of joyful blindness.

When both these pictures crossed my newsfeed on January 11th, my first thought was thankfulness. How little time has actually passed between these two moments, but how many lives. Henry’s great grandfathers were born before the invention of insulin, and it’s only because of insulin that Henry’s alive.

In the early days after a T1D diagnosis, there’s shock and sadness, but there’s also an awareness of the great heritage of suffering and success that comes with T1D. I hope we’re at a moment in T1D history when the burden of care improves and the instance when some unlikely, scrappy doctors and scientists stumble onto the next breakthrough.

 

Richard’s Diagnosis Story

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 “Richard’s Diagnosis Story” in his own words. Richard has been living with type 1 diabetes for over 70 years. In 2006 he joined the diabetes online community, where people were fascinated to hear Richard’s story of living with T1D in the 1940s and beyond. In 2010, Richard published his autobiography, “Beating The Odds: 64 Years Of Diabetes Health.”

Richard, diagnosed at age 6, September 1945

I was born in 1939, in Roanoke, VA, and I had several illnesses before my fifth birthday: three different kinds of measles and my tonsils removed. When I was five I had chicken pox and mumps, and while recovering I began showing the classic symptoms of diabetes— excessive peeing and drinking so much water. My parents took me to three different doctors, but they did not recognize my symptoms, so there was no diagnosis. I lost my appetite, and refused to eat. I just wanted to drink.

One doctor prescribed a tonic that was supposed to restore my appetite. I still remember the bad taste and tall glass bottle filled with dark brown liquid. It was like the snake oil medicine that we have read about from the past. The tonic did not help at all. It probably made my condition worse because it contained sugar. By the time we saw a fourth doctor I was very weak, and had lost a lot of weight. My ribs were very noticeable when my shirt was removed. The fourth doctor recognized my symptoms, and took a blood sample in his office. The sample was sent to a lab, and we waited a few days before returning to his office for the results.

His office was on the second floor of a building on Main Street in Salem, VA, and I struggled to slowly walk up the long flight of stairs. My father was carrying my three year old sister, but I was too big to be carried. In the doctor’s office, my mother and I sat in chairs while my father stood behind us, still holding my sister. I do not remember the doctor’s face, or his words, but I’ve never forgotten my mother’s pale and frightened face. In September 1945, a few days after my sixth birthday, we were told that I had sugar diabetes. I was hospitalized the next day, and don’t remember much about the stay, except for the injections and the blood that was collected. Insulin, taken from pigs or cows caused me to gradually regain my appetite, and I stopped losing weight. By the time I was home, I looked like a human being again, and my strength was very much improved.

10258864_1238484469500822_1295893666899560174_o

Richard and his family a few months after his diagnosis

While in the hospital, I was treated by Dr. Davis and he became the doctor for my whole family. I saw him every six months, and he took blood samples, testing them in his office lab while I waited. My blood sugar was always high, but I don’t recall him ever mentioning numbers. We were not concerned though because we did not know about the complications that might occur with my eyes, kidneys, and other body parts. One shot per day, one urine test, large portions of food, and no worries. Ignorance was bliss.

There were no meters for testing blood sugar at home until the 1980s, almost forty years after my diagnosis. We tested my urine at home, every morning, but the procedure for doing that was very awkward. The first thing I did each morning was to pee in a cup. Some Benedict’s solution was placed in a large test tube, and several drops of urine were added. The test tube was placed upright in a container of water on our stove. When the water had boiled a while, the test tube was removed, and the color of the solution was observed. The original color of the Benedict’s solution was blue. If the solution containing the urine was blue, after boiling, then there was no sugar present in the urine. If sugar was present in my urine, then there would be colors: green, yellow, orange, brick red, or brown. Green showed a low amount of sugar, brown showed very high sugar.

944912_1236570436358892_5889406186695641956_n

testing blood sugar with Benedict’s solution

It was nice that there was only one injection each day before breakfast, but there were no fast and slow acting insulins, so control of my blood sugar levels was not good at all. The animal insulin was a 24 hour insulin, so the morning urine test result determined the dosage, but urine tests do not approximate blood sugar well. The glass syringe and metal needles were kept in alcohol, and sterilized with boiling water on the stove once each week. We had our own well, and the water contained limestone deposits. After boiling, there was a white film on the needles and syringe, so we had to use a whetstone to remove the deposits. The limestone frequently clogged the insides of the needles, so we had to push a small wire through the needles to unclog them. If the deposit was not removed it was difficult to push the needle into my skin. The needles were almost three quarters of an inch in length. I was supposed to push the needle into the muscle on top of my legs, or on my arms. My father gave me my injections until I was ten.

During the night I would sometimes have hypos. Some of those hypos became seizures. I would thrash around during my sleep, my teeth clinched, my muscles would become drawn, and I was almost unconscious. Mother poured small amounts of the sugar water they kept nearby on my lips, until I had enough in my mouth to partially awaken me. Then I drank the liquid more freely. I was always drenched with sweat, and very weak after a seizure. My body was sore the next day and the sugar water caused my urine test to show high the next morning. I continued to have seizures for many years, but they occurred less frequently when I was older. There was never any effort made to call an ambulance. Perhaps it was because the nearest hospital was at least 10-15 miles from our house, and I doubt that the paramedics in the ambulance had glucagon injections. Home care was probably the best solution. I think my mother saved my life many times during the years I lived at home.

Dr. Davis told us that I should not eat sugar, but no other instructions about an appropriate diet were given, so we didn’t know about carbohydrates. We lived on our little ten acre farm, and we had cows, chickens, pigs, and a horse. There was a very big garden, and an orchard. We bought very little food at the grocery store, so processed food was rarely part of my diet. Our own milk, eggs, vegetables, and fruit were readily available. We had meat from the chickens and pigs. Mother canned food each summer and fall. I helped my father with the farm work, and I was very hungry, so I ate big portions at every meal. I ate all the same food that my parents and sister ate, except items containing sugar. Mother used saccharin to sweeten the pies, cookies and cakes that she made for me. I ate lots of bread, potatoes, and other things that were not good for me, but we thought all foods were okay, if they did not contain sugar.

My parents did the best they could for me during my childhood and Dr. Davis gave no instructions that helped. We did not know there could be potential problems, and I led a rather normal day to day existence. There were no health problems with my diabetes throughout my childhood, despite my very irregular blood sugars. I have often wondered why I did not have DKA back then. Was something protecting me? All the fast acting carbs I ate each day (without correction boluses like I take now) must have kept my blood sugar very high. I’m sure my parents were devastated by my diabetes, and not knowing how to care for me. My parents raised me in much the same way that they were raised in their mountain homes. They were raised on farms, and they loved that kind of living.

When I talk to parents of T1D children diagnosed today, I advise them to join online diabetes support groups for parents. Children with Diabetes, created by Jeffrey Hitchcock, and the many parents’ support groups on Facebook are very good sources of advice and information for parents. Getting support from experienced parents can help so much! There are books that are available, but I think the online community is best. Having T1D children meet other children in their communities is a very good idea. Diabetes camps in the summertime are an excellent idea. Attending the Friends For Life conference in Orlando, FL is another source that I have seen work so well with children who are type 1.

10903837_1036689413013663_7375763260254691701_o

Richard at 76, having lived with T1D for 70 years

If you’d like learn more about Richard’s life with type 1 diabetes, then check out this video interview where Richard shares his experiences with Daniele Hargenrader. Richard was also interviewed about living with T1D for over 7 decades on Diabetes Mine. Richard will also be a speaker at the 2016 FFL conference in Orlando, FL. You can follow Richard on Twitter @Richardvau157.

Diabetes Awareness Month Begins!

About two years ago, I was celebrating a lack-luster birthday. My son had been lethargic for a couple of weeks. He was peeing through diapers, drinking a lot, and he was very cranky. After bedtime, a friend stopped by our house for a birthday toast. What should have been a pleasant conversation devolved into me telling her how I’d scheduled an appointment for my son the next morning because I thought he had diabetes. Earlier in the day, my mother-in-law called to wish me happy birthday, and I quickly switched the topic to Henry’s strange symptoms and my suspicions of type1 diabetes. I look back at these moments and am thankful I acted so quickly; however, now I realize how little we knew about living with type 1 diabetes. Twelve hours after my friend left, my husband and I were in the car with our three-year-old son on the way to the major children’s hospital in our state.

Now, I’m really aware about diabetes, but here’s the paradox about awareness: you can see outlines of what you don’t know. I don’t know how Henry is going to handle T1D in school. I don’t know how his teachers will handle managing diabetes in a classroom as we change grades from year to year. I know Henry can and will rebel against T1D in his teen years, and I don’t know how to walk that with him yet. I wonder how T1D will affect his major friendships and relationships, and potential children, who would have about a 10-20% chance of developing T1D.

November is Diabetes Awareness Month, and November 14 is World Diabetes Day, which is celebrated on the 14th because it’s William Banting’s birthday. Banting and Best co-discovered insulin in 1921. Diabetes Mine lists the many social media campaigns planned for this November. Semisweet is planning some guest blogs and will be participating in Project Blue November’s Instagram campaign this November. We’ll see you here and in pictures.

Now that we’re recovering from Halloween, we’re kissing diabetes goodbye.

#kissdgoodbye & Halloween via Dexcom

#kissdgoodbye & Halloween via Dexcom