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.

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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.

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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.

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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.

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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.

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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.

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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.

Amy’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 “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.

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8 years after diagnosis

Wanda’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 the diagnosis story of someone who’s lived with T1D for 53 years. Here’s Wanda’s Diagnosis Story in her own words.

Wanda, diagnosed at age 12, December 19, 1962

About two weeks before Christmas in 1962 I developed a tremendous thirst and along with it, numerous trips to the toilet to pee. This was not immediately noticeable to my mom, but after a week of this, I required a parental note so that I could be excused from my class to go the bathroom, which was an embarrassment for a twelve year old.

My mom’s initial thinking was that I had a bladder infection, so thankfully she set up an appointment with our family doctor for the following week. By the time of the appointment, I was drinking (and peeing) over 1 gallon of water, plus other fluids, each day. I had a huge appetite, but was listless and quickly losing weight, almost 20 pounds in 2 weeks. Our doctor did a quick urine test in his office and diagnosed me with type 1 diabetes, which was called Sugar Diabetes at the time. I was twelve years old and in Grade 7 when I was diagnosed with type 1 diabetes.

I was admitted into the children’s ward of the local hospital and spent one month in the hospital. I remember being worried I would miss Christmas, but the doctor said I could go home for Christmas day if I returned in the evening, which is what we did. I was in hospital for about 4 weeks as I learned the complexities of diabetes care. They also figured out how much insulin I would require to manage each day. Glucose testing was mainly done with Eli Lilly urine testing strips, which certainly weren’t as accurate, but gave you idea if you were in trouble. There was no sliding scale, and pumps weren’t yet invented. I measured food in “exchanges” and ate the same amount every day, so 1 ounce of meat was 1 meat exchange a slice of bread was a bread exchange, etc.

Wanda 1 year after diagnosis

Wanda 1 year after diagnosis

The diabetic care back then was a bit of a nightmare, initially. I had a stainless steel needle that my mom sharpened on a matchbox (the gritty strike edge), and she then sterilized by boiling it in a strainer along with a glass syringe. She did this every night so I was ready for my single shot in the morning. I took snacks to school for mid-morning and mid-afternoon, as well as my carefully measured lunch. I was on the school track team and also played field hockey, so if I needed extra sugar, I drank some juice.

By the time I was 19 we had disposable syringes and needles available at the pharmacy, but with the appearance of recreational drugs on the scene, I would get a hard time when I purchased them, so I had to show them my medical card stating I was diabetic. I got my first home glucose-testing machine when I was in my thirties, and it was about the size of a paper back book, but still fit in my purse. It cost about $250 and was not covered by our medical plan at the time. Thankfully, managing diabetes has gotten easier.

There was NO history of type 1 diabetes in my family, so no one was on the lookout for it. The signs are great thirst and consumption of liquids, resulting in increased urination. Fast weight loss and lethargy come quickly afterwards. I lost weight two weeks after the symptoms appeared. A simple blood glucose test can diagnose diabetes.

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Here I am­— 53 years (and still counting!) after diagnosis. I really have 2 jobs in life: one is regular life, school, employment and the other is managing my diabetes. It makes for a busy schedule, but I am still here, enjoying the results of good management and great medical care. I have travelled the world: Australia, England, much of Europe, Hawaii, the Bahamas and many of the U.S. States, without a single incident. May every newly diagnosed child take heart; there is a great life ahead. You just have to believe it and go for it. Diabetes doesn’t have to run you; YOU manage IT!

Connor’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 Connor’s Diagnosis Story in his own words.

Connor, diagnosed at age 15, October 30, 2009

I walked up to my math teacher’s desk, and asked for a hall pass. He looked at me with furrowed brows, “Connor, we’re only ten minutes into class. You should have gone before the bell rang.”

Something was going on with me. In my family I’d always been known as the one with the iron bladder, the champion of long car rides and movie viewings. But recently, I had to go to the restroom every half hour. Liquids rushed through me, and no matter how much I drank I was still thirsty.

When I returned to the classroom and gave the pass back to my math teacher, he studied my face and then the rest of my body. “Are you feeling alright?” he asked me, his tone more accusatory than concerned.

Later that day, I met my dad in the school lobby to sign out for a doctor appointment my mom had scheduled to address these strange symptoms.

“Are you okay?” my dad asked, as he pulled me into the corner of the lobby.

Over the past two weeks, teachers, students, and family members asked me that question over and over again. A couple of weeks ago, I’d had the flu and dropped a considerable amount of weight. My performance in cross-country meets had also descended into a valley of disappointing rates and unfinished races, but I figured I was still recovering.

I usually brushed off this repeated question, but when I met my father’s gaze, I knew there was something else. Sighing heavily, my father ran a hand through his hair. “Connor, I’m just concerned. Your math teacher contacted me earlier today and told me he’s concerned that you’re bulimic.”

“Excuse me?” I demanded in a whisper, my voice raspy from a dry throat. “Dad, you see how I eat. There’s no freakin’ way I’m bulimic. How could you believe something like that?”

“Connor, I’m not saying I agree with him, but you have been going to the restroom a lot after meals and you’ve lost so much weight that… well, it comes to mind.”

My family doctor was known for being a jokester amongst my siblings and myself. Generally, visits to the clinic involved thirty minutes of minimal tests being done while he rambled on about the crazy experiences of his own kids, or dropped as many bad puns as humanely possible. So when he stepped into the room, white lab coat swaying as silent as his wordless mouth, I knew there was something deeply wrong.

“Connor, we need to get you to the University of Iowa Children’s Hospital immediately,” he said sternly as he flipped through his clipboard until he found the form that he was searching for. He explained to me that my blood sugar was close to 500 over the normal level, sitting dangerously at 610. This also meant that my body had entered a state called ketoacidosis, a condition where my body was trying to urinate out toxins, which explained my constant thirst.

I stopped hearing anything that he said after the words “near coma” were uttered, and even my mother’s tight grip on my hand as she rushed us down the highway towards Iowa City couldn’t stop them from circling in my head.

With my mother beside me in the emergency room, a nurse explained that I’d lost so much weight because my body could no longer break down carbohydrates. Due to my inability to digest food properly, my body was now attacking the little amount of fat I carried. Before the appointment, I’d merely seen myself as a scrawny fifteen year old who’d lost a couple pounds, not 25 pounds in 2 weeks.

The medical staff told me that with the right training and equipment, I could battle Type 1 Diabetes, that with time I would get used to lancets and needles and blood drops and damaged nerves in my fingertips. There was one crucial piece of knowledge that was implied: T1D cannot be defeated, only subdued.

On my second night in the Pediatric Unit, I was jolted awake as a sharp object stabbed into my pinky finger. I looked over to see a nurse in blue gloves testing my blood sugar. “Sorry, I didn’t mean to wake you,” she said.

“It’s fine,” I replied groggily, and motioned towards the tester in her hand. She brought the meter over so I could see it. The screen flashed: 248.

I gave her my best smile, but I averted my gaze, not wanting her to see my fear. With all the talk of comas, needles, diets, and other health complications like loss of sensation in limbs, and (very rarely) blindness, my morale was still low.

“You play Kingdom Hearts?” she asked me, holding the Nintendo DS case that’d been sitting on my nightstand: the newest game in the series, Kingdom Hearts 358/2 Days. I’d played it five hours that day, sitting in my bed while my parents conversed with doctors about insurance and insulin.

She laughed, “I love these games. You know what? You’re kind of like a video game character now.”

I sat up and pulled my legs to my chest, resting my chin on my knees. “How?”

“Well, you have to regulate your blood sugar, right? And what you eat and drink, and how much you exercise, and when to take shots. Stuff like that.” She held up the blood glucose meter, pointing towards the digital numbers. “This is your life bar. And if your health gets too low, you need to drink a potion to get yourself back at the top of your game. But when it’s too high, you’ve got a status ailment, so you need to take your insulin, which is an antidote. And your lancet is your weapon against not knowing what your levels are.” She winked at me. “You’re going to be fine. You should get back to sleep, you’ve got your four hour class on diets and insulin dosages tomorrow.”

I realized then that many health professionals were here trying to make their patients’ lives easier or, at least, bearable. She didn’t need to make that analogy for me, or even talk to me when I’d woken up. But she did, and that made all the difference.

Connor today as a college student

Connor today as a college student

Melia’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 Melia’s Diagnosis Story in her own words.

Melia, diagnosed at Age 9, February 15, 2003

Usually when I am asked how I was diagnosed with type 1 diabetes, I tell the short and sweet version, “My brother had the flu then I got the flu. He got better and I didn’t.” This is followed by the onslaught of how I got diabetes. “Did you have a bad diet? Were you overweight? Is that the good or bad kind? Does your family have a history of diabetes?”

No, no, there is no good kind, and still no. In fact, when I was diagnosed T1D was not really considered genetic yet. Today, research suggests otherwise. The best way to describe it is to say that there is something in my genes that was waiting to be triggered. I just happened to get the right bug at the right time, which made my immune system turn on itself and attack my pancreas. If I hadn’t gotten sick those genes may have never been triggered, or it could have just been prolonged. So, to make the short, sweet story not so sweet here is the long version:

Melia one week before diagnosis

Melia one week before diagnosis

On Valentine’s Day I lay my head on my desk as my classmates dug into their candy bags and Valentine’s cards. After school my parents packed my brother and me in the car and we left for my grandfather’s birthday celebration in Chicago. The drive took an extra 2 hours, because I had to use the restroom so often. We sat in a fancy restaurant for a late dinner. I made my first trip to the restroom before the drinks arrived. We ordered our food, I drank all my water as fast as I could and left for my second trip to the restroom. A few minutes later I went back for the third time. This time I felt nauseous. My parents wondered what was happening to me, but I insisted I was fine. We had only just begun eating when I was sick at the table. The next part I remember is my mother putting me in the bathtub at my grandparent’s house where she noticed I’d lost an unbelievable amount of weight. Immediately, I was taken to the E.R. One look at me and the doctors knew what was wrong; they didn’t hesitate to admit me. I was diagnosed with Type 1 Diabetes on February 15, 2003. My A1c was 15 and my blood sugar was 1024. The doctors were shocked that I was coherent because, as I would find out later, I should have been comatose. I was in 4th grade.

The next 5 days were spent in the Intensive Care Unit, working toward lowering my A1c. From there I was transferred to the hospital where I began learning how to check my blood sugar, take insulin, and count carbs. I gave myself my first injection. I started on NPH and learned the “clear to cloudy” rule of mixed insulin injections. I would start Humalog and Lantus when I went home. As I began learning the routine that would become my lifeline, everything from the previous few weeks also began making sense. I showed all the symptoms of Type 1 Diabetes: increased thirst and hunger, frequent urination, weight loss, lethargy. Even though my mom had taken me on several doctors’ visits my parents had continually been told it was merely a virus, a cold, the flu. My brother had gotten over his flu symptoms, but the antibiotics made no difference for me.

By the end of my week in the hospital, everyone could tell that I was feeling like myself again when I intentionally triggered the floor lock down with my hospital I.D. bracelet.

After that week I was released from the hospital and 3 days after that went home to Iowa. The first trip I made to the grocery store took all day. Tasked with finding low carb snacks, my parents and I read every last nutrition label in the store. Sugar free Jell-O, string cheese, gold fish, and celery. This would become the usual for me throughout all of school. I’ve eaten enough celery in my life to never want to look at a stalk again. Slowly, things returned to some kind of normalcy. I went back to school and I was getting healthy one day at a time. Every day is still a learning experience.

Of T1D, I will say this: There is an immense list of things I’ve been told I can’t do. I disagree with that list. I survived college. I know how to carry 6 months of insulin supplies on a plane. I’d like to get my scuba certification. My mother taught me that I was a kid first. So I have never let my diabetes stop me. I refuse to let it. I am not a diabetic. I have diabetes. It is my disease. I have diabetes, it does not have me.