Diagnosis Archives - The Diabetic Journey

Category: Diagnosis

This Is My Life Support, This Is Type 1 Diabetes

Posted on July 20, 2021July 20, 2021 by thediabeticjourney.com

This Is My Life Support, This Is Type 1 Diabetes

By: Katharine Orona

Instagram: @this_is_type_1_diabetes | Blog: thisistype1diabetes

10 years ago I was only a few weeks away from having my life turned upside down and changed forever. I was only weeks away from being diagnosed with an incurable disease, one I didn’t bring upon myself, and one I knew nothing about.

I was about to be diagnosed with Type 1 (LADA) Diabetes.

I had been the picture of health. Perfect blood work results at every checkup, thin, and young. I was 26 years old, about to get married, and recently promoted at work. It was then that I thought I had everything under control and everything seemed to be perfect.

I had all the classic symptoms but didn’t know what they meant: extreme thirst, frequent urination, and rapid unexplained weight loss (at 5 feet tall, I went from 106 lbs to 90 lbs in less than 3 months). My doctor knew right away it was diabetes when I went in with my symptoms. I went to the ER, was immediately admitted, and spent 5 days at the hospital.

After that it took me 5 years to come to terms with my disease.

5 years to go through anger, denial, and grief over losing a life I had known for 26 years. 5 years to decide I was ready to start using a different form of treatment, an insulin pump.

I was so resistant to this technology. I saw it as life support, I saw it as a restriction, I saw it as something I would have to conceal and be ashamed about. When I was finally ready and took the plunge, I loved it from day one. To my surprise, it was freeing, not restricting.

It is life support, but I am thankful for it.

However, I still felt the need to conceal it. I dreaded being asked questions about it or having people wonder why I was wearing a pager (90s folks you know what that is). I felt embarrassed that I needed something to live that other people did not. It took a long time to own it.

A few years later when I was pregnant with my son and my doctor suggested a continuous glucose monitor I went through the same feelings all over again. Another medical device? More things that will make it harder for me to pick an outfit that can conceal that too? But, I knew I had to do it so I did.

My son was worth every awkward stare and every question I faced.

These are tools that I use to make my life a tiny bit more normal. They keep me alive. When my son was born 5 weeks before his due date, and I later made the connection, I realized that he was born on the 6th anniversary of my diabetes diagnosis, at the same hospital I spent those first 5 days after diagnosis.

That fateful day in 2007 that I thought was the worst day of my life, turned out to be the best day of my life 6 years later.

Today I can finally say I not only wear my medical devices with pride, I rock them.

And no matter what method of treatment you choose, know that it’s keeping you alive and you are stronger because of it. Feel comfortable with whatever makes you different. Because it makes you YOU.

As Dr Seuss once said: “Today you are You, that is truer than true. There is no one alive who is Youer than You.”

Adult-Onset Type 1 Diabetes: How I Was Misdiagnosed With Type 2

Posted on June 25, 2022June 25, 2022 by thediabeticjourney.com

Adult-Onset Type 1 Diabetes: How I Was Misdiagnosed With Type 2

Jenna Steinhauer

Blog: Lipstick.Coffee.Insulin.

My name is Jenna and I live in beautiful Southern California with my two kitties. I’m the very proud auntie of a spunky 5-year-old niece and wild almost 3-year-old nephew. I don’t have any children of my own yet, so, I am obsessed with spoiling and loving these two little humans that mean so much to me.

I have two sisters; one older, who is the mother of those sweet kids I told you about, and a twin sister, who has Cerebral Palsy and lives with my parents. I’m in love with all things makeup and fashion and I have a slight addiction to iced coffee; only iced though, I hate hot liquids!

I also feel it’s necessary to lay some ground work here and note an important component to my story: my mother is a type 1 diabetic and was diagnosed as a teenager. I would say that prior to my diagnosis, I had a good working knowledge of what type 1 diabetes was; at least what it was in my mother’s life.

I knew how hypoglycemic symptoms presented in her and understood what needed to be done in order to correct them. However, because she has always managed her disease on her own, I was not completely aware of the intricacies of this disease and the risks and side effects associated with it.

To be honest, I never truly understood the seriousness of it because I didn’t have the scientific knowledge behind it. It was something that was always a part of her life and it was our normal. My mother had been diagnosed with the disease long before I came along and she always knew how to take good care of herself.

My journey began in June 2016;

I was 29 years old at the time and other than being somewhat overweight, my health was that of a normal twenty something. One morning, I got ready for work as usual, but when I got in my car and began to drive, I noticed that all of the street signs were abnormally blurry.

I instantly thought that all of my years of fighting the use of contacts and purposefully forgetting my glasses, had finally caught up to me and my eyesight was beginning to worsen. As the days progressed, my eyesight seemed to continue to decline.

Even though I hated wearing my glasses, I finally caved and began wearing them because my eyes had become so blurry that I could hardly see a person clearly, just standing a few feet away. When I finally made it in to see my optometrist, the doctor evaluated my eyes and much to my surprise, he indicated that my vision had not really changed much since the previous year; definitely not enough to warrant such drastic alterations in my vision.

This was puzzling, but the doctor began to ask me questions that puzzled me even further.

He questioned me regarding my thirst and frequency of urination, to which I replied that I had noticed an increase in both, but chalked it up to the summer heat that was imminently upon us. My eye doctor immediately told me that I needed to go see my primary care physician.

He mentioned type 2 diabetes, as he had some familiarity with it, being diagnosed with type 2 diabetes himself a few months prior. This caught me off guard, but I knew I wasn’t a healthy eater and loathed working out, so I figured the idea of this disease couldn’t be too far fetched.

I left his office that day nervously obsessing over what could possibly be wrong with me. I knew I needed to lose some weight, but it just didn’t seem like my health and age warranted such a serious condition. Not to mention, to be so suddenly hit with these symptoms did not make sense either.

Nonetheless, I made an appointment with my PCP for a few weeks out, as that was the earliest time slot available. I returned to my optometrist a few days later to pick up some trial contact lenses and the doctor seemed overly concerned that I had still not been in to see my primary care physician.

He told me I needed to go see a doctor sooner, even if it meant that I had to go see a different one that was available now. He actually told me not to come back to his office until I had seen a medical doctor! I left with contacts in hand and even more concerned about what could be going on with my body.

As the days progressed –

I began to get this unquenchable thirst. It was so strong like nothing I had experienced before. I remember going into my boss’s office and raiding his case of water bottles and I would just drink them one after another. Constantly running to the restroom, even waking up in the middle of the night to make multiple trips. I started to become very frustrated with the symptoms I was experiencing.

I finally made it to the long 4th of July weekend and headed to my parents’ house for a few days. My scheduled doctor’s appointment was still a couple of weeks out, but luckily, my mom whipped out her blood glucose meter so we could finally check to see if my blood sugar was out of normal range.

Both mornings that we checked that weekend, my fasting blood sugar was over 350 mg/dl. This obviously concerned us even more, but still, the thought of type 2 diabetes was in our minds and we figured it would all be sorted out at my upcoming doctor’s appointment.

After all, I wasn’t sick like my mom was so many years ago when she was admitted to the hospital at the time of her diagnosis. I was also older than the typical type 1 diabetic at diagnosis; but in the same right, I was much younger than a typical type 2 diabetic patient. It was all very confusing!

On the 4th of July, I had left my parents home and went back to my home to celebrate the holiday with my friends out on a boat. I felt ok in the morning, but by the time the afternoon was upon us, I started feeling progressively worse.

I was guzzling any liquid I could find and spent more time running to the tiny restroom on the boat, than I did enjoying time with my friends. Began to feel extremely fatigued, to the point that I could hardly stand up. Almost felt like I was going to pass out. I ultimately made the decision to leave the boat and go to urgent care by myself.

I arrived to my local urgent care office about 30 minutes before closing and upon giving the nurse at reception my symptoms, she immediately too me back ahead of the others in the waiting room.

The doctor evaluated me and requested the usual blood, urine, and glucose labs. He asked me a series of questions and ultimately misdiagnosed me with type 2 diabetes.

He even joked that I was a “very sweet young lady,” after assessing some of my results. I explained that I understood what diabetes was because my mother is a type 1 diabetic. But he told me that due to my age and weight, I was a clear type 2 diabetic, which was different.

My official blood sugar reading from the labs that evening was 518 mg/dl. In case you are unfamiliar, standard is around 70-100 mg/dl. The doctor mentioned that he wanted to give me an injection of insulin in the office, but didn’t want to risk sending me home without a way of monitoring my blood sugar.

Instead, he sent me off with a prescription for Metformin, told me not to eat any carbohydrates and asked that I come back the following day to see him again. I felt miserable for the next 24 hours as I tried not to eat or drink a single carb, scared that something worse would happen! Also very uncertain as to what this diagnosis meant for my future and obsessively Googled everything I could on type 2 diabetes.

I returned the next day without having so much as a single carb, practically starving myself all day. My blood sugar was 168 mg/dl this time and the doctor appeared to be pleased with how the Metformin was working and told me to follow up with my primary care physician.

After a couple of weeks on Metformin and watching my carb intake, I began to rapidly lose weight.

I remember waking up one morning and all of my clothes were too big! It was the strangest thing because I had always struggled to lose weight and it was now practically melting off of me with ease. My co-workers noticed and would ask me what I was doing to shed the weight. I honestly didn’t know what to tell them; the truth was that I wasn’t doing anything!

The appointment with my PCP finally came and my doctor spent roughly 45 minutes going over type 2 diabetes and the various things I could do to manage the disease. She even explained that I could essentially get rid of the disease if I lost some weight and began exercising. I was optimistic about my diagnosis and was determined to rid myself of this disease.

After all, I had the option to make it “go away,” type 1’s like my mother, did not. I left that appointment and continued to lose weight with minimal effort; in my mind attributing it to the fact that I was now conscious of my carb intake.

I had a follow up appointment with my PCP a week later and my mother’s diabetes doctor suggested that I request a GAD antibody test, just to see if I had the antibodies present for type 1 (autoimmune) diabetes.

Having never evaluated me herself, my mom’s doctor did not doubt my diagnosis; she just thought it was something I should look into as a precaution.

When I met with my PCP again, I asked her about having this test run, but she was not familiar with it. She said it was not necessary because I was a classic type 2 diabetic. However, she finally agreed to run the test, to “make my mom feel better.” (On a side note, I don’t mean to paint a bad image of my primary care physician; I really did like her. This just proves that you must always be persistent and advocate for your own healthcare).

The lab was sent off and I received a bit of a shocking email from my PCP a few days later, explaining that I DID indeed have the antibodies.

And I needed to monitor my blood sugar closely, as this was indicative of type 1 diabetes and I could become insulin dependent very soon. Which concludes that I was in fact misdiagnosed with type 2 diabetes all along.

I was glad to have an answer as to what was going on, but I was so scared as to what this actually meant for me, for my healthcare, and for my future. In order to reconcile my fear, I acted like it was not a big deal and I could handle it because my mom was a type 1 diabetic and I grew up around watching her take good care of herself.

I was sent off to be seen by an endocrinologist and was formally diagnosed with type 1 diabetes mellitus.

I didn’t understand it at the time, but my body had entered what my endocrinologist referred to as the “honeymoon stage”. This is where my pancreas was giving the appearance of normal insulin production.

However, the antibody levels in my body were so high that the lab wouldn’t actually record the number; I was later told I “overachieved” in the antibody category. In a very rapid time frame, I had lost approximately 25-30 lbs. And this was mostly due to the side effects of untreated type 1 diabetes, not the fact that I started monitoring my carbohydrates.

A lot has transpired over the last 11 and a half months since diagnosis –

But I am happy to say that I have the BEST endocrinologist and healthcare team. I am learning to live with a disease I watched my mother deal with my entire life. Which I now realize I actually knew very little about. I am aspiring to continue to learn more and more every day.

My Dad, My Hero

Posted on June 18, 2022June 18, 2022 by thediabeticjourney.com

Jaime McCurry

Blog: type1derful

—

In honor of Father’s Day, I wanted to recognize my diabetic hero, my dad.

Growing up, all diabetes was to me was the fact that our house was always stocked with Diet Coke and hearing my mom always check with my dad to make sure he had “his stuff.” I never really knew what that meant but I knew my dad had diabetes and one time when I was in intermediate school we even did a walk to raise money for the American Diabetes Association.

I also remember reaching a point in my life where I started getting worried about what having diabetes meant and I even asked my dad if I would ever have diabetes. Being supportive, loving, and always protective dad he is, he assured me I had nothing to worry about.

Fast forward to February of my sophomore year of high school.

We were coming up on the end of a week long February vacation and I was scrambling to finish a project I had barely started. Over the past couple of weeks, I had started to become very thirsty. I was finishing off gallons of milk on my own and drinking two gatorades before my recreation basketball game even started.

I was going to the bathroom…all the time. But to me, I thought this was normal, I mean I was drinking so much so it only made sense I spent the rest of my time peeing it all out right? Then I started waking up in the morning feeling like I just chewed juicy fruit which was bizarre.

I shook it off and thought I probably forgot to brush my teeth the night before. It wasn’t until my vision started getting really blurry that I brought it up to my mom and she put all the pieces together. She had been dating my dad when he was diagnosed with Type 1 diabetes, so all the symptoms I was having reminded her of what he had gone through.

She told me to have him check my blood sugar when I got home but the stubborn teenager I was shook it off and figured she was exaggerating. Three days went by and I started feeling worse so I finally approached my dad and had him check my blood sugar. The reading was over 500. I looked at him and said, “Is that normal?” And I will never forget the look on his face as he told me it wasn’t.

As I’m sure you can guess in the next 48 hours my official diagnosis followed and my new life with diabetes began.

As I mentioned earlier, I didn’t know much about diabetes because my dad never really talked about what it was like. He kept his life with diabetes very private and most people outside of our family didn’t even know he had it.

Everything he did was “normal” in my eyes growing up and diabetes was really just a word. When I was diagnosed, my dad was with me every single step of the way. When I was too afraid to give myself injections, my dad was there (even though I was 16 years old).

He’d drive to the house I was babysitting at, to my basketball practice, or a friend’s house I was sleeping over just to help me give myself my insulin. For the first two weeks, he made every single meal for me and for the first couple months helped me count the carbs for every single thing I ate.

He was there for me for my first real meltdown and “why me??” moment following my diagnosis and sat there and let me cry and be mad about it because he understood.

Every single day my dad shows me how to not only be an extraordinary person but how to live beyond my diagnosis.

He’s run a half marathon raising thousands of dollars for diabetes research in the process, he’s started a support group in our town for families affected by Type 1, become a mentor for newly diagnosed families, and volunteered with JDRF on numerous occasions.

He encourages me to do anything I want and supports me following all of my crazy dreams. Although our choice in managing our disease is different, the best part is he realizes that my diabetes is different than his.

Many people diagnosed with Type 1 diabetes don’t even know anyone else that has it for months or even years following their initial diagnosis date. I feel so privileged to have my dad there for me through every single high and low and as a role model to never let diabetes get in the way.

Happy Father’s Day to all the dad’s out there thriving with diabetes, raising strong diabetic warriors, and loving their diabetic partners/other family members and friends. I think I speak for all of us when I say we love you and we wouldn’t and couldn’t do it without you.

One Year Since My Diagnosis -

Posted on June 4, 2022June 4, 2022 by thediabeticjourney.com

One Year Since My Diagnosis -

Camilla Roelants

When I was diagnosed with Type 1 Diabetes last year, it was the end of my world as I knew it. I had just turned 30, I was 10 weeks pregnant with my 4th child, and there was absolutely no history of Diabetes in my family.

I’m ashamed to say that until it hit me, Diabetes was a disease I was only vaguely aware of.
I knew there were different types and I had a very basic understanding of what having diabetes might imply. But overall, in all my years of taking the beta cells of my pancreas for granted, I had overlooked the seriousness of this disease.

I was a busy Mum of two girls aged 9 & 10, and a boy aged 4. I had battled through a period of depression the previous year, after losing someone dear to me to Cancer, and so feeling tired & drained was nothing out of the ordinary.

Even when I developed other symptoms, such as sudden weight loss, excessive thirst, and increased urination; this didn’t set the alarm bells ringing. Hindsight is great… but it’s always late.

I went to my GP complaining of migraines, and only as I was leaving did I mention, nearly as an afterthought: ” Oh, by the way, I’ve been really terribly thirsty lately…” The GP did a finger prick, and my blood glucose was around 25 mmol/l (450 mg/dl). Fasting.

I was sent to A&E, where nobody would tell me what was going on. All I could make out when doctors looked at my charts was “DKA”. When I was eventually wheeled into a ward I was able to Google this mysterious term, “DKA”, and tried to read up as much as I could about it.

The following day I was sat down by a nurse, who told me that a) I have Diabetes and that b) It’s Type 1, and c) that I would be started on insulin injections immediately. She told me my HbA1c was 12.8%, that this was off the charts, and that she didn’t know how I was still conscious and functioning.

Once I had been started on insulin therapy with 4 daily injections, my vision was extremely blurry for about three weeks. This was extremely frustrating, as I couldn’t do any research about Type 1 Diabetes, and I also could not distract myself in any way, as I could nor read a book, nor drive my car, nor watch television, nor read text messages.

I was absolutely panicked. Above all, I was worried about my baby, and how the high levels of blood glucose prior to my diagnosis may have affected his or her development.

It felt like I had been thrown in the deep end. It was a difficult pregnancy, but my little boy was born by c-section on October of 2016, and he is a happy, healthy 7 month old today.

I think that by nature, her children are a mother’s main priority. Her own needs will always come second. Before my diagnosis, I had often skipped a meal or neglected certain of my needs to ensure my children’s needs were met first.

But since my Type 1 Diabetes diagnosis –

I have, at times, had to put my own needs first, more often than not to treat a low blood sugar. It feels highly unnatural. It makes me feel terribly guilty as a mum. Especially when it is your newborn son who has to wait 15 minutes for his bottle and you cannot explain it to him, as you would with your older children. But I have no choice but to treat the hypos, time my meals, constantly check my blood glucose levels, take the insulin injections, and attend the medical appointments. Unfortunately, both in the short and long term; it’s do or die.

Luckily for me, I have amazing children. They have a good understanding of my disease, and they can even joke about it. An example: My son (4 at the time) and I were snuggled up on the couch watching something one evening. I had a packet of digestive biscuits, and I took one out of the packet to have with my tea. My little boy reaches out for the packet and says cheekily: “Well, I’ll have TWO, cause I don’t have diabeetus!”. We both laughed.

I am only a year into my Type 1 diagnosis and I’m still learning every day.

I think that when you get this type of diagnosis, you go through all the usual stages of grief. Which is denial, anger, bargaining, depression and acceptance. You grieve the end of your life as you knew it, but life does go on.

I have found great support on online forums and Facebook pages. Other, more experienced Type 1 diabetics have told me that eventually you really learn to live with it. And everything diabetes related becomes second nature. I look forward to that day.
Until then, I’ll just keep gnawing through the straps.

Blood Sugars and Broadcasting: A CNN Reporter Deals with Diabetes

Posted on June 1, 2022June 1, 2022 by thediabeticjourney.com

Blood Sugars and Broadcasting: A CNN Reporter Deals with Diabetes

By: Oren Liebermann

This post contains affiliate links

I had about two minutes until I was on air, and I knew my blood sugar was low. I could feel it in my hands and in my concentration. I was a little bit dizzy, and my hands were shaking. These have always been the first two signs that my blood sugar was low.

Normally, it’s not a problem. I always keep a stash of emergency sugar around. Most often, it’s a bag of Gummi Lifesavers. First, they’re delicious. Second, I love the appropriateness of having Gummy Lifesavers as my emergency sugar. And third, it’s predictable. Five Gummi Lifesavers is 15 grams of carbs.

But normally I’m not about to go live in two minutes. I knew the sugar wouldn’t have time to hit my system, which meant I would be going live on CNN with low blood sugar. The viewers wouldn’t notice. Unless I started stumbling. Or screwed up a word. Or my brain locked. Then they would most certainly notice, and I would have no choice but to plow forward or admit that I had low blood sugar and tell the anchor to go to someone else.

I told my producer - sitting in our little control room about 15 feet away from me - to get me the Lifesavers from my bag. A moment later, he walked into the studio. He couldn’t find the Lifesavers, so he just grabbed the whole bag and brought it in. I rummaged through and pulled out the Ziploc with my emergency sugar. As quickly as I could, I downed a few Lifesavers. Then I started thinking about what I was going to say.

WORK AND DIABETES

I never told my bosses about my type 1 diabetes when I interviewed. They had no right to know and I had no obligation to tell. Besides, as long as I didn’t have a bad low or pass out mid-interview from DKA, I would be absolutely fine. Knowing I would have a long day of interviews, I intentionally took one less unit of insulin than I needed to make sure my blood sugar was adequately high throughout the day. It worked, though I did start feeling the symptoms of low blood sugar toward the end of the interviews.

When I started at CNN as the Jerusalem Correspondent, it was a different story. I told everyone immediately that I had type 1 diabetes. I explained to them the symptoms, showed them how to work my insulin pens, and, most importantly, taught them how to use a Glucagon shot. Everyone was cool with it, which was a relief. Occasionally, my coworkers have asked for “refresher courses,” and I have showed them the insulin pens again or explained to them how diabetes affects my system.

Dealing with my coworkers was the easy part. The hard part was figuring out how to manage diabetes on a 24/7 basis. On days when I’m in the CNN bureau in Jerusalem, it is relatively easy. No matter how big the story and how many times I am broadcasting live, I can always check my blood sugar and adjust as needed.

The harder days are the days I am out in the field all day, nowhere near a convenience store or restaurant. Then I have to plan my insulin, my meals, and my blood sugar well from the very beginning of the day. Add to that the challenge of Middle East weather - if the day is extremely hot or extremely cold, I burn through blood sugar even faster, making healthy management of diabetes even harder.

I have always had a simple plan. On days I am out of the office all day, run my numbers high. Instead of aiming for 80-120, I shoot for 120-160. It gives me a buffer in case something goes wrong or in case my day gets so busy that I forget to eat. And this has happened a few times.

CREATIVE SOLUTIONS

I have always tried to find creative solutions for diabetes, and I don’t mean eating cinnamon to help control my blood sugar. I mean ways of dealing with blood sugar when days are entirely different and dynamic. A daily routine makes diabetes easier to manage; a changing week adds even more complexity to the daily challenge of the disease.

I was diagnosed with type 1 diabetes on Valentine’s Day 2014 in Nepal. My wife and I were backpacking around the world, and my diagnosis came 5 months into our trip. I was the first person in my entire family with diabetes. After a month at home recovering and learning about the disease, my wife and I decided to get back on the road.

We picked up our trip where we had left off, backpacking through Southeast Asia. We made our way through the countryside on trains and buses. Each day was different, and I had to figure out how to manage my blood sugars under different conditions.

It wasn’t easy, but it became good practice for my current job. It requires rigorous monitoring ob blood sugars. I don’t have a CGM (which I may change very soon), but I routinely jab my finger to check blood sugars. I have no qualms about checking 8 times a day. Whatever it takes to know where my numbers are.

It’s not fun. I don’t think anyone would ever describe diabetes as fun. But it’s never been a question of fun for me. I know that if I manage my blood sugars, diabetes won’t stop me from doing anything else. It didn’t stop me from traveling, and it won’t stop me from reporting.

HIGHS AND LOWS

I’ve had a few lows before live shots. It happens. It’s never fun, it’s always a bit worrying, but it’s a part of the deal as I see it. Part of the problem is the sensitivity around Jerusalem. Every word needs to be chosen carefully, because the story is so sensitive in every direction. If my blood sugar is low and I screw up a word, it could have disastrous consequences on my reporting.

My bosses at CNN - when I finally told them I have diabetes - have always been incredibly supportive. Not a single one of them questioned my decision to write a book, and they have always encouraged me to do as much outreach as possible. It may not be their disease, but they understand the importance diabetes has to me and to so many others.

Diabetes may not make the news all the time, but it is always becoming more relevant and more important to the world at large. And that is something I am always ready to talk about on air!

Oren Liebermann is a CNN Jerusalem Correspondent. He was diagnosed with type 1 diabetes at the age of 31 while backpacking through Nepal. He has written a book called the “The Insulin Express: One Backpack, Five Continents, and the Diabetes Diagnosis That Changed Everything” that shares his diagnosis and journey of resilience and self-discovery.

Diagnosed with Type 1 Diabetes as an Adult: The Day That Changed My Life Forever

Posted on May 25, 2022May 25, 2022 by thediabeticjourney.com

Diagnosed with Type 1 Diabetes as an Adult: The Day That Changed My Life Forever

By: Valerie Abner

I’m approaching my 2nd Type 1 Diabetes birthday and just turned 41. Yes, I’m one that was fortunate enough to be diagnosed at 39. I’m the mom who was saved by my mom and my son’s broken leg.

Here is my story on how I was diagnosed with type 1 diabetes as an adult:

July 6, 2021 . . . it’s the day that my life changed forever. It’s the day that I now like to call my birthday.

It all began with what I thought was a stomach virus on July 4th. I was on the couch all day. The next day was a Sunday and just as anyone recovering from a virus, I was weak, but feeling better. We went to a nearby park for the afternoon. My son was playing on the playground and fell from the fireman’s pole, fracturing his leg in two places.

After leaving the hospital we had to get pain medication and when we arrived back at home, I was sick all over again. I vaguely remember falling asleep on the bathroom floor. Monday morning came and again I was weak, but feeling some better. My husband had to go for a meeting and my mother came to stay with us, mostly to care for my son.

The symptoms were just the same. I thought maybe I was dehydrated and began drinking Gatorade, and lots of it. It was just after lunch when I lost control of myself. I was dizzy, confused, lethargic and completely out of my mind. I could not catch my breath. I somehow got back in the bed when my mom found me and called for an ambulance.

I knew nothing. Not even enough to know that I was in serious danger.

At the age of 39… Who would have ever thought that I would be diagnosed with Type 1 Diabetes as an adult? I spent the next week in ICU being treated for diabetic ketoacidosis or DKA. If it wasn’t for my son’s broken leg, my mother probably would not have been at our house. Today, I’m grateful for both.

I was on numerous shots for the first 4 months. My body went into a chemical imbalance and then I fell into depression. I could not eat or sleep. I was nauseous. My legs ached and I could not function on a daily routine. I was losing weight. I would pray each day just to get me to bedtime and at bedtime pray just to wake up the next morning.

It was horrible. The worst feeling in the world. It was on my September 2015 visit to the endocrinologist that she realized I would not make it without the insulin pump. I’m currently using an insulin pump and a continuous glucose monitor.

Oh, how I am so thankful for so many things. I am thankful for broken bones. Without that I may not be here today. It was through those life events that called out for help on the day that I would need it the most. I am thankful for the Lord above that knew that I would be needed for so much more. I am thankful for a family that loves me and has fought this battle every step of the way beside me. I am thankful for every day that I’m alive.

In This Journey We Have Learned Gratitude

Posted on March 1, 2022June 29, 2022 by thediabeticjourney.com

In This Journey We Have Learned Gratitude

Written by: Shawn Nelson

December 28, 2014….that date will forever be in my head.

A few weeks before, that is when things started to change for us. It started with what I thought was anxiety when we went out to eat. Christian, who had just turned 11 at the time would be doubled over in pain after eating meals. Saying it made him “feel funny” and he couldn’t explain it. That led to extreme fear to go to restaurants because he then associated it with feeling ill.

My heart broke thinking this was his life…and to let that fear take over crushed me. Soon after Christian all of a sudden had a burst of health awareness….we found him munching on celery, making great food choices, drinking water, and eating ice…lots and lots of ice. It was non stop. And for one split second I actually thought to myself, “something seems wrong.”

But every road I turned I had a reason for why he was acting in this manner. Christian then caught a “bad cold”….one that seemed to linger. He was lethargic constantly, he couldn’t even keep his eyes open to drive to the grocery store. But he just kept telling me, “Mom, I am fine. Just tired from being sick but I am getting better.” He was then invited over to a friends house to sleep over with his twin brother. I hesitated but he insisted he felt better. They were like family to us so I let him go, knowing they would contact me if there was an issue. Maybe this would get him out of his funk?

The next morning upon picking him up, it hit me.

The door opened to the house and I knew something was horribly wrong. After not seeing him for 24 hours I really realized the symptoms such as how skinny he was, how tired he looked, and how black and sunken in his eye sockets had become.

The boys got into the car and when I asked them how the sleep over was, Christian couldn’t answer with out his words slurring into one complete mush pot. I tried talking myself out of any conclusion…he just had a sleep over. He was probably exhausted and just needed sleep. I went home to drop off his brother and told my husband we were running into the doctor. In the car on the way I called our family doctor.

It all of a sudden hit me.

He had lost a ton of weight, dark circles, eating ice non stop, sleepy, and his siblings were teasing him of not brushing his teeth and asking him if he ate Juicy Fruit gum. The RN in me took over and I told our doctor….he either has pneumonia or diabetes. In my heart I knew it was the later.

His tests at the doctor’s office confirmed it and we were in the car next driving to the nearest hospital that treated children with Type 1 diabetes. Upon getting in the car Christian was coherent and carrying on a conversation. Still a bit slurry, but still chatting. It took us about 30 minutes to drive to the hospital and by the time we got there he couldn’t walk. I ran inside searching for the triage desk. They actually gave me a mask to put on him and we were told to wait. I said, “He has diabetes, it’s not contagious” I refused the mask and was asked to wait.

The next part was a blur.

We were whisked into a bed immediately and I vaguely remember fighting to get him back there…which seemed like an eternity. I held this 11 year old body in my arms and his brother just draped himself over crying. Poor guy was so scared. Blood draws, oxygen, crash cart parked at the foot of his bed, and my poor baby was no longer talking. He was out….slipping away fast.

All I could do was stare. I went into nurse mode and needed to know every test they were doing, and every move that was being made. We soon were transferred to the PICU. My boy was breathing on his own, but I knew things were teetering on the other side. With my medical knowledge and the things they were prepping the room with…I just knew. Slowly we started to see improvements with him over the next few days. Glimmers of hope and even a smile once in awhile.

After levels returned to just about normal, and we were out of the woods of a coma or death…the education started. I was like a deer in headlights. Christian, on the other hand, was a rockstar. That boy just took everything he had in him to take control.

Fast forward to 2 years later.

He loves to go live on social media, he loves to teach. My once shy and quiet soldier has turned into a roaring lion. He tells me, “mom I don’t need to be around other kids that have T1 just to feel normal. I am normal, and this is just part of my life.”

He does have his days when being strong is just to much. And I can see it in his eyes. Those are the days when he gets really quiet and I will ask him….”Hey bud, you okay?” And all I get are tears. “I am so tired of this mom. When will there be a cure.” Together we hug and cry…and to be honest say a few curse words to let that anger out, which usually stimulates a laugh and a smile.

Deep down I know my warrior is strong, but all I want to do is take this away from him.

In this journey we have learned gratitude. Gratitude of all things around us. Life is amazing. We have gratitude for family, for our Dr on that scary night in the PICU, for our friends that ask questions before judging, our current Dr for his understanding/empowerment and education, technology (don’t know if as a mom I can live without a Dexcom), and immense gratitude for insulin.

Oh sweet insulin, thank you for keeping my son alive. And for those families out there that are fighting a chronic illness; stick together like glue. Surround yourself with nothing but positivity and people helping you to row your boat! It is true when they say you can find your heroes in your own backyard because I certainly have found mine.

How I Was Misdiagnosed with Type 2 Diabetes In My 40’s

Posted on February 27, 2022February 27, 2022 by thediabeticjourney.com

How I Was Misdiagnosed with Type 2 Diabetes In My 40’s

Written By: Erin Clausen

In my 42 years leading up to my Type 1 diabetes diagnosis, I’d never been the type of person to get sick much at all. An occasional cold every couple of years. Maybe a quick 24-hour flu a couple of times in my entire life. My immune system always seemed to function incredibly well. Better than most I’d always thought.

Eight months before my diagnosis, I had the flu. It was the most awful three days. I couldn’t keep anything down. My bones ached miserably. A seemingly inescapable relentless aching that made me want to scream. I could do nothing but hope to sleep in between diarrhea, vomiting, and dry heaves.

In the months that followed that horrible flu. I noticed I wasn’t feeling up to par. I started having to use the bathroom in the middle if the night. Where before, I almost never got up to pee during the night. It soon became two to three times a night. I also noticed that I was often very thirsty. I would wake up every couple of hours and drink from the 32-ounce glass of water on my nightstand.

I even started to run out halfway through the night and needed to refill my cup. Then the frequent urination became five to six times a night. The conversations I’d have in my mind every time I’d wake up needing to pee went like this. “Dammit Erin, stop drinking so much water and you won’t have to pee so much!” or “I wonder if I should see my doctor about overactive bladder issues?”

I had also been losing weight easily. I chalked it up to the fact that I was a massage therapist and I expended a ton of energy during the day working on clients. I even wore a fitness activity/calorie burn monitor. It confirmed that I was burning a lot of calories. In hindsight, my job and level of activity probably saved me from super high blood sugars and DKA. I had been exercising my blood sugar down every day.

When I finally had enough of the frequent bathroom trips, thirst, and shear exhaustion I decided to get in with my doctor’s office. I saw a female Physician’s Assistant at that time. I loved her. She listened to my complaints and said:

“It sounds like diabetes.”WHAT?? Diabetes never even entered my mind. “But I’m the healthiest person! I’m the low carb, broccoli, quinoa, nutrition peddling queen!”, I said. “I’ve never really had bad blood glucose tests in my life! She replied, “well, let us just run a bunch of tests and see what comes back.” She ran tests for thyroid, blood glucose, cancer, etc, etc…

A few days later, there was a voicemail on my home phone when I’d returned home from work. “Erin. I need you to come by my office tomorrow. You don’t need an appointment, just come by. One of your tests came back with some distressing results.” OH, MY GOODNESS! I just knew it was something bad, like cancer. Still, not even thinking how I could possibly have diabetes.

I got to her office the following day and was quickly taken back to an exam room. She entered the room and greeted me. She immediately got to the point. “Erin, you’re diabetic. Your fasting blood sugar was 356.” I was instantly stunned. “But how did this happen?” I’ve always been so healthy!” She and the physician she worked under assumed and misdiagnosed me with Type 2 (because of my age) and sent me home with a prescription for Metformin. She was sent a referral to the Endocrinologist. Our small town doesn’t have any Endocrinologists. The closest one is 90 miles away. She told me they should be calling me soon to schedule an appointment.

It was Friday—I went back to my work and tried to get my mind on something other than the terrible news I’d just gotten. I worked until 5 pm, went to dinner with my husband and told him the details of my day. When I arrived home that night, there was a voicemail from the Endocrinology office wanting to schedule my appointment. Shoot!! I missed the call. Now I’ll have to wait until Monday to call them back.

After some brief reading online about blood sugar ranges, and quickly learning that a BG in the 350 range was not good at all, and I should probably be on insulin.

The next day, I was afraid to eat anything with carbs for fear that my blood sugars would go even higher. My breakfast consisted of string cheese and almonds. I also started my own research into diabetes. Type 2, just made no sense at all to me. Generally, I had always thought Type 2 was gradual in its onset of increasing blood sugar levels. My diabetes just came almost out of nowhere!

My limited knowledge of Type 1 or Type 2, was that Type 1 was the juvenile type, and the “bad” kind that you were born with or happened or in your childhood and you needed insulin to survive. And Type 2 was what adults got… What “grandma” got. Although no one in my family had Type 1 or Type 2, even grandma… I quickly stumbled across information on other types I never even knew existed. Like Type 1.5 LADA. “THIS!!! This makes more sense! This is probably what I have!”, I said out loud.

Sunday mid-afternoon, still on my string cheese and almonds meal plan, I found a Facebook group on 1.5 LADA and started talking with people. I explained my situation about my diagnosis of Type 2. The people in the group asked if my doctor had given me a blood glucose meter or if I had tested my urine for ketones. I explained that I hadn’t been given a meter and I didn’t know how to test for ketones. After a couple of them urged me to go get a meter, and ketone test strips, my husband jumped in the car and headed to the drugstore to purchase the items I needed.

It was early evening now. The people on the group walked me through how to use my meter and how to test my ketones. The color on the ketone strip was dark. Not the darkest color on the strip but it was the dark pinkish purple block right below it. Took a picture of the strip and posted it in the comments on the group thread. I also posted that my blood sugar was still 350, and I hadn’t eaten hardly anything except a couple handfuls of almonds and string cheese. They all kept commenting, “GO TO THE EMERGENCY ROOM!” So off we went!

The small-town hospital ER where I live took me back to a private room in the ER department. They tested my urine and blood sugar. Not in DKA. But they gave me a shot of 4 units of fast-acting insulin to start out, put me on an IV for fluids and monitored me with multiple finger sticks over the next few hours. They gave me 2 more units and then sent me home around 2 a.m., once they decided my blood sugar was within normal range and my ketones were down.

At 7 a.m. the next morning, Monday morning, I had to leave on the 90-mile drive for a routine appointment I had with the spine surgeon. I had some neck issues due to my job that would most likely result in a surgical fusion at some point. I felt like death warmed over when I woke up. I tested my blood sugar. It was 120. That’s okay. So, why did I feel so hungover??

I decided to leave earlier than necessary for my 12 p.m. spine doctor’s appointment and thought I’d take a chance on calling and possibly getting in to see the Endocrinologist that day. I felt so nauseous and I couldn’t stomach anything to eat. I drove with a bowl on the passenger side at the ready should the urge to vomit arise. I pulled over at 9 a.m., at the halfway point in my journey.

I called the Endocrinologist office. Told them who I was, that I went to the ER the night before, that I had another doctor appointment across the street from their office at noon, but I could be there as early as 10:15 or anytime after 1 p.m. in case the doctor could see me or if he got any cancellations. The receptionist put me on hold so she could talk to the doctor. She came back on and said the doctor could see me if I could be there at 10:15. “I’ll be there!”, I said. And I was back on the road.

I arrived at the Endo’s office. Still looking and feeling horrible. I was shown into his private office. Awards for Excellence in Endocrinology were everywhere. A reassuring sign! A tall, slim gentlemen in his 70s entered the room and introduced himself as Dr. Atcheson. He asked me many questions, then asked if he could do an examination in his patient room next door. I was shown there by his assistant. She tested my blood sugar at that point. It had already climbed to 210, without me having eaten anything that morning.

After his examination. He said, “Well young lady. I’d be very surprised to find that you’re Type 2. I’m 90% certain you have Type 1 diabetes. But I’m going to send you to the lab for a couple more blood tests….” “But I thought mostly babies and children got Type 1, I said. He told me that about a quarter of all Type 1’s were diagnosed after the age of 25. Many are diagnosed in their 40s and 50s.

Then he brought his assistant back in to show me how to use insulin pens. Told me to go get my blood work done, then have a sensible lunch, and give myself 3 units of fast-acting insulin and he’d be calling me frequently the next few days. I went to my next doctor appointment. Then, still not feeling up to eating, I pulled into a convenience store. There I found my staple sustenance, string cheese, and almonds. I pulled around to the back parking lot and injected my first self-administered shot of insulin. I thought to myself, “Is this really happening?” I proceeded to cry my eyes out for a few minutes. Then I was back on the highway toward home.

The next day, Dr. Atcheson called me with the additional test results. I was definitely Type 1, not Type 2. Ironically it was April Fool’s Day. I guess I can never forget my D-Day! The week and a half that followed, that 70-year-old doctor, called me four times a day. At 9.a.m., then at noon or 1 p.m., then around 5-6 p.m., then again around 9 p.m. He’d ask me what my blood sugar reading was, what I had eaten, told me how to calculate my fast-acting insulin to cover the carbohydrate in my meals, told me how much long-actings insulin to give myself at night and made adjustments for my dosages as needed. Judging from the caller ID, he always called from his office.

After a week and a half, he said he felt I had a good enough grasp on carbohydrate counting and administering my insulin and he didn’t need to continue calling. He then set me up for an appointment with a diabetic nutritionist to make sure I was proficient at carb counting. He also recommended I consider a Dexcom Continuous Glucose Monitor and an insulin pump in the future. I later found out he didn’t usually deal with diabetic patients in his practice anymore. I was switched to the other endocrinologist/diabetes specialist in the office for my continued visits. As it happened, that doctor was on vacation when I was diagnosed.

I feel very fortunate to have been diagnosed quickly and without being admitted into the hospital for a week due to DKA. It could’ve been so much worse. Life is in my mid-40s is so very different. I’m on a continuous glucose monitor and an insulin pump. Doing well. Many would say I do so well, it seems effortless. It’s not nearly as effortless as I make it appear to everyone around me.

Not an hour goes by without thinking about, treating, dosing and planning my day around diabetes. I’m approaching my three-year Diaversary this April Fool’s Day, 2017. I haven’t celebrated my last couple of Diaversaries, but think I’ll celebrate this year, and maybe even have the cake. Just a little extra insulin added to my celebration of being alive.

We Are Not Letting Diabetes Win Anymore

Posted on February 22, 2022June 29, 2022 by thediabeticjourney.com

We Are Not Letting Diabetes Win Anymore

By: Jodi Otis

10 years ago our lives were forever changed when my then 6-year-old son, Bailey, was diagnosed as a Type 1 Diabetic. I will never forget the day his beautiful brown eyes looked at me as he uttered the words….”Mom, am I going to die?”

I swear my heart stopped for that moment in time. I saw his life flash before me in just a matter of seconds. The tears softly rolled down my cheeks as I promised him he was going to be OK, that no matter what, he was going to feel better soon.

Before we knew it we were off to Children’s Hospital where his blood sugar was almost 800 and he had large ketones but was not in DKA. We spent the night and as many T1D parents do—you admire them as they sleep. As I sat in the darkness and silence the tears fell like rain.

And I prayed—I prayed for him to find peace and the strength to handle this. He was six, 6. He should be worrying about if he was going to jump in mud puddles or ride his bike not what his blood sugar is. I knew we had a long road ahead of us.

The next two days we had training so we could take our child home with us and be experts in diabetes. I should have known he would have had the most amazing courage, he took the poker and meter from the nurse and tested his sugar all by himself. He really has no fear of anything!

4 years later, when he was just 10, his 14-year-old sister, Bree, wasn’t feeling well and he could see the telltale signs and he told her to take his meter and check her sugar and if my heart did not stop again….her blood sugar was almost 300.

I couldn’t help but feel anger—not towards her but for her. Anger that she will have to struggle for the rest of her life after seeing him go into DKA twice and be hospitalized. After seeing him have high blood sugars and low blood sugars and feel awful. After seeing him get sick with the slightest cold or virus sometimes. Seeing him have to adjust….EVERY…SINGLE… THING…HE…DOES….TO ….SURVIVE.

I knew she would have a hard time, she is such a picky eater and not a good sleeper, meaning she can sleep for 12 hours at a time, crazy teenagers! She went through a period of depression and I felt her slipping through my fingers and she used her diabetes as a weapon.

I was heartbroken and angry for so long, I felt like diabetes had won, it had taken over my family and my life. Until we decided that we are not just surviving anymore. We are not going to let diabetes win anymore. She had to find the courage to come out on the other side of depression, not an easy thing to do.

Bree has an amazing spirit. Her smile lights up the world. Bailey has the strength of a million men. His courage is far beyond words. Both Bree and Bailey have raced Motocross for several years. It is mentally and physically demanding. Diabetes could have robbed them from a sport they love but they never gave in or gave up. They are my heroes, they are my true warriors. We choose how we live each day, you, me, we choose. Not the disease.

Every day that we fight, we win.

How's God's Plan Helped Save My Daughter From Going Into DKA

How God’s Plan For Me Helped Save My Daughter From Going Into DKA

Posted on February 18, 2022June 29, 2022 by thediabeticjourney.com

By: Jamie Smith

Most stories of diagnosis of Type 1 diabetes begin with a critically ill child and a diagnosis of DKA. Not my little girl, Mia. But to properly tell the story, I must take you back to 2001.

Long before she was ever even dreamed of. My son was born premature and his life was saved by Karen, a critical care transport nurse. Like most parents, I made deal after deal with God in exchange for my son’s life. I watched him fight while on a ventilator and heard God tell me to become a nurse. I listened.

I decided that I wanted to give back in honor of Karen and to honor the deal God had made with me. Fast forward 11 years, I was working as a critical care transport nurse. My daughter had just turned 2 years old. I noticed that she seemed to always want her sippy cup. Then she began waking up in the mornings completely soaked with urine. Her diaper would be full, pajamas soaked, crib soaked. I tried decreasing her fluids in the evening, but she was so thirsty.

Early one morning, about a week after these symptoms had begun, I was getting ready to leave for a 24hr shift on the critical care ambulance when my nurse brain finally clicked: check her sugar. I happened to have a glucometer at home, so I checked her - she was 203. Hmmm… So I called my endocrinologist (I had Graves’ disease at the time) and told him what was going on with Mia. He reassured me, said it wasn’t high enough to be diagnostic, she could just have an ear infection and to check her again the next morning when I got home from work.

The next morning, I rushed home and Mia was still sleeping. Good, I thought, this will be a fasting blood sugar and it’ll tell me more. She was 436. I packed her bag, packed my bag, and we headed to our local ER. I called the transport company to give them a heads up about Mia’s inevitable transfer to Nationwide Children’s Hospital, I called the ER and let them know we were coming. I hadn’t even changed out of my uniform. I held my listless daughter on my lap and watched as they stuck an IV; she never even so much as whimpered. Her sugar came back at 462, but she was not acidotic.

In the meantime, the critical care transport company I worked for had been called on another run. Nationwide Children’s said they could send their critical care truck, but it would likely be 5-6 hours. The endocrinologist from Children’s asked the ER doc if he thought I’d be willing to ride in a regular medic truck as the nurse thus making it a critical care truck. He said yes, absolutely she will (I forgot to mention that I used to work as a nurse in this ER and knew the staff very well.)

So that’s what I did. It came full circle. The deal I had made with God about giving back and becoming a nurse had helped to keep my daughter from becoming critically ill with DKA. The endocrinologist at Nationwide Children’s gave me a hug and told me if I wouldn’t have caught it when I did, she would’ve been in DKA within the next 24 hours.

How God's Plan For Me Helped Save My Daughter From Going Into DKA

My daughter was diagnosed with Type 1 diabetes at 2 years old. Today, she is an extremely smart kindergartener who is in the accelerated reader program. She wears an Omnipod and a Dexcom. She doesn’t let it slow her down and she has even made a YouTube video teaching others how to check their blood sugar. Her best friend is another little Type 1, Mady. She is an inspiration to so many and is loved by everyone who meets her.