Tag: Diagnosis

My Early Life, Without Sugar

My Early Life, Without Sugar

My Early Life, Without Sugar

By: Richard Vaughn

*This post contains affiliate links*

When I was diagnosed in 1945, the doctor told my parents that I should not eat anything containing sugar. I don’t remember my reaction to being denied sugar at that time. My diagnosis was only a few days after my sixth birthday.

I do remember missing sweet things to drink. For some time I drank milk from our own cows. That was not a good choice, but we did not know that. It did not contain sugar, so we thought it was ok.

When we went grocery shopping my family did not buy candy, cookies or ice cream. I don’t know what my sister thought about that, she was three years younger, and she probably wanted sugary treats.

A year or so later, we discovered saccharin at a drugstore –

My mother learned to prepare desserts sweetened with saccharin. I had pies, cookies, and a birthday cake sweetened with that wonderful stuff. Saccharin was great! Mother made desserts sweetened with sugar for the rest of the family.

I was happy with my own desserts, and I never wanted to taste of theirs. My father prepared homemade ice cream, and a portion sweetened with saccharin was set aside for me. I always looked forward to that. It was a summer treat.

One day in our grocery store we saw a display of little bottles containing colored liquids. It was called Kool Aid. It was invented in the 1920s and initially sold in concentrated liquid form.

Later on it was sold as a powder in little packets. The Kool Aid we bought in the 1940s was in a concentrated liquid form, so we added water and saccharin. It made a delicious drink. I was very happy.

I had low blood sugar at times for many years –

My mother gave me a glass with some water mixed with sugar. That was the only sugar I had for very many years. I had some awful seizures at night several times each year, and the sugar water was ready for those occasions.

If I could not drink the liquid, my father would sit behind me on my bed and prop me up while my mother rubbed the sugar water on my lips and gums until I had enough to bring me around, so I could drink some of the liquid. I think I may have associated the sugar with my seizures, and that may have made sugar even more undesirable.

There were no meters for measuring blood sugar for my first 40 years after diagnosis, so my urine was tested for sugar each morning to determine my insulin dosage, and then I had to depend on my own feelings to detect low blood sugar the rest of the day.

While sleeping at night my parents would listen for me to be thrashing around in bed to determine that I had low blood sugar. Their bed was close to mine for many years, so that worked out well.

Now I will fast forward to the current century –

I’ll tell you about a discussion that my sister and I had a few years ago. Our father worked at a post office, and he had an afternoon and evening shift. He got home at 11:30 PM. She told me that he would stop at a store on the way home from work and buy candy bars. They were hidden high in a cabinet in the kitchen.

I can remember entering the kitchen several times and my sister was standing with her back against a wall, with her hands behind her. I guess I was not curious about that. She was hiding a candy bar she had been eating.

I never saw a candy bar, and she waited more than sixty years to tell me about that. We laugh a lot about her candy bars. I am glad she had them, and I am glad I did not see them.


To know more of what it was like to be a diabetic in the 1940’s and beyond, you can read Richard Vaughn’s book: Beating The Odds: 64 Years of Diabetes Health 

 


Why Are They Judging Me?

Why Are They Judging Me?

Why Are They Judging Me?

By: Marrium abid Sandhu

Some people have a background or a story that is so central to their identity that they believe their life would be incomplete without it. Here’s my story..

Why are they judging me?

Is this the reality or do I suffer from schizophrenia? I’m not from another galaxy, I mean, I just have diabetes.

Society took it upon itself to delineate me as a diabetic. On the mention of my name, the ignorant minds of humans formed an image of a weak, disoriented, bewildered and egotistical teenager.

I was nine years old when I was first diagnosed with type-one diabetes. It shook me to my core. I was not old enough to even comprehend what diabetes meant. But the way people around me reacted; it felt as if I was an unstable nucleus emitting radiations.

My heart told me to be optimistic, persuaded me to look at life from this new perspective, but everything in my life went downhill. On various occasions during the early stages, I was able to pick myself up and do my daily chores the normal way but that did not last that way for long.

Pricking my fingers four to five times a day and taking insulin shots before every meal was never an easy task. Until high school, I used to go around hiding the fact that I was a diabetic. I had an irrational fear of people judging me. I hardly socialized. I kept to my room and to myself, reading miserable and depressing novels, injecting myself with something that was supposed to make me better but felt no less than a cruel punishment.

As I grew older,

things started to improve and diabetes became a part of my daily routine. I realized that having diabetes was a part of me but it in no way defined me. It had rehabilitated me. It had made me resilient, mentally and morally.

As I progressed through high school, I craved to do better in academics, sports, and life in general. Having diabetes gave me strength to face any challenge or problem that came my way.

Friends are of imminent importance, you cannot function without having someone to talk to, someone to associate yourself with. Socializing made me grasp the significance and need for someone to share my feelings with, someone to trust with my problems.

My family and I shifted a lot due to my father’s work. Being on the go, I constantly met new people who made me confident in my own skin. I went to Greece on a school trip for 4 weeks. Exploring a new country, a completely different environment was an experience I will trade for nothing.

Doing everything myself, from shopping to laundry, I gained a fair bit of poise and familiarized myself with adapting to a new place and a completely different way of life. The diabetic, anthrophobic girl had transformed.

My hard working and astute sense of nature led me to be selected as a part of my school’s student council and in addition I represented my school in various national level sports competitions. I volunteered myself to help the underdeveloped schools in my city.

I taught English and Mathematics to a group of class 9 students. I saw a whole new way of life within my culture in that school. And now I’m studying architecture in one of the best universities in turkey.

I am a diabetic.

And I do not have a problem with people judging me because of that. If they judge me, it does not depict who I am, it depicts who they are.

To sum it up in the words of Sonia Sotomayor, the current associate justice of the Supreme Court of the United States,

“Diabetes taught me discipline”.



 

Navigating type 1 diabetes and learning along the way

Navigating Type 1 Diabetes and Learning Along the Way

Navigating Type 1 Diabetes and Learning Along the Way

Monica Westley, PhD

Here is my story about our daughter Allison, and the incredible lessons she has taught us. We have always been a family of explorers and adventurers, readers of books and lovers of nature. We encouraged our kids to learn as much about the world as they could. Still, until four years ago, we like so many others, knew very little about type 1 diabetes.

Allison had been losing weight (but growing taller) thirsty (but it was hot here in SoCal) and then began to have flu symptoms. On the second day of the “flu” (DKA) we brought her to her pediatrician. I asked “Could this be high blood sugar”? The pediatrician said, “Oh its very unlikely but why don’t you go to the ER, we don’t have a way to measure that here!”

At the ER, our daughter was lying down, super sick, yet still we had to ask that she be seen several times. We waited for over 3 hours, along with those who were waiting to be seen for a common cold. Finally, in the back, the young doctor sampled her blood with the glucometer and turned to me. “Your daughter has type 1 diabetes. It’s a life long condition for which there is no cure. You will be taken by ambulance to the Children’s hospital where you will learn how to live with this.” And so began our journey.

Initially, its all a blur. You’re thinking,” Ok I think we can fix this if….”. Then you realize there is no way out of this condition, and you must move forward as a family. You start to learn all you possibly can about it and how to optimize blood sugars. For the first 2 years we checked her every night at 2am, and more if her blood sugar didn’t settle down.

Then came the advent of Nightscout, which was a group of amazing parents who hacked into the existing technology to allow the blood sugars to be visualized by parents. Quickly, Medtronic and Dexcom responded with their own “version” of Nightscout. The ability to see Allison’s blood sugars on our phones by our bedside and to be alarmed if she came out of range was invaluable. Our rattled nerves could settle a bit. Now she could go overnight with friends, and that was a freedom gained!

Then we learned about TYPEONE Grit, a low carb, high protein way of eating (WOE) endorsed by Dr. Richard Bernstein, and followed by many. Google him, he’s amazing. This WOE was not recommended by our pediatric endo or the CDE in the hospital, but it was an amazing and invaluable resource and has helped keep her blood sugars much more stable. Another win!

Finally, after she was experiencing many undiagnosable “Highs” I began to search for an answer. Allison uses the Medtronic pump, and I asked our endo to change her from the plastic cannula in the MIO quickset to the SureT needle. Their feeling was that she didn’t really need it. However, when I pressed they changed it. Almost immediately, she was in better control. Yet another win!

From all these experiences we learned, when your child has Type 1 diabetes, you MUST continually be your child’s advocate, you must be proactive, you must keep searching for new advances and ways of doing things. At times you will be exhausted, sad, maybe on your knees, but don’t lose faith! This disease will unexpectedly teach you many things.

What else did we learn? We learned that Allison has an amazing spirit! At times, diabetes dampened her spirit, but it’s ember has never gone out. Her capacity for resilience, tenacity and resourcefulness has grown stronger with every year.

What has she done since her diagnosis? Allison has been class president, homecoming queen, a runway model for JDRF, raised over $20,000 for JDRF. She has worked in a type 1 diabetes research lab at Harvard, started a Hands on Science program at a local underprivileged school and kept it going every week for 3 years, received the Presidential Service Award, National Honor Society recommended, straight As, Cum Laude Society, Peer Mentor leader, started her company Mermaid Medicine, acted in the school musical, created her column “In Someone Else’s Shoes”.

She was named “19 under 19 to watch” and completed 4 years of high school varsity sports. She currently runs the fastest mile on the track team. Allison has also recently been accepted to USC (Merit Scholar) and to Harvard. Right now she is preparing to go on a 2 week wilderness adventure off the grid in the Sierras where she will be the only person with T1D.

Pretty cool, right?

People say, “She makes it look so easy”. And she does. I do want to tell those on “the outside of diabetes” just don’t forget that behind it 24/7/365 she is walking the tightrope of blood sugars. It requires strength and grit. She is strong and most importantly, she is kind. Because of all she deals with in her own diabetes realm, her compassion muscle is very strong. She even gives those like our current US Budget Director Mick Mulvaney, who think there’s one type of diabetes, and judge those who have it, compassion.

Heres what I would share to the “newbie parents”. Be your child’s advocate. Trust your gut, you are on the front lines of this with your child. Be proactive. Never stop learning about the disease and new technology, clinical trials, and ways of eating (WOE). Find community. I formed a group called “The Sugar Mamas” we meet for lunch and keep each other sane. Keep an eye on the online community of diabetes: GLU, CGM in the Cloud, CDN and especially TYPEONEGRIT are all important networks with helpful people, many who have great ideas and inspiration. Most are going through what you are going through. Strength in numbers!

Finally, keep your dreams for your child’s success alive. Encourage them to reach. Encourage yourself to stay strong. Play the song “You’re an Overcomer” really, really loud ! Don’t forget to have fun. If one day is terrible, try again the next day. Look for a sliver of humor in the crazy diabetes things that happen. And don’t forget to pray for the day when we all wake up to the front page headline ” A Cure for Type 1 diabetes has been found”.


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What Diabetes Really Is: (Spoiler) It's Not a Unicorn Frappuccino

What Diabetes Really Is: (Spoiler) It’s Not a Unicorn Frappuccino

What Diabetes Really Is: (Spoiler) It’s Not a Unicorn Frappuccino

Diabetes…

How do I describe diabetes?

Or what is it like to live with it?

When you look on the internet it’s defined as mostly sugary foods, cake, BigMac’s, soda, and a Unicorn Frappuccino from Starbucks. A Unicorn Frappuccino is loaded with sugar, but it WILL NOT cause diabetes.

There are two types of diabetes:

Type 1 Diabetes– where the immune system attacks the insulin producing cells in the pancreas. And Type 2 Diabetes– where the body doesn’t use insulin properly and can sometimes be controlled with diet and exercise. But genetics can also play into Type 2, where it had nothing to do with one’s lifestyle. But I digress…

It’s funny right?

Sometimes I question whether I’m too sensitive about it. Whether it’s not that big of a deal. Right?! You have to laugh to get through life.

I get it. The memes are humorous to those who don’t know anything about it. Ignorance is bliss. But is the disease humorous? Is it really? I mean I wish I could laugh it off.

But I face this monster everyday. And it is a monster. It’s not funny. It’s not a joke.

When I was diagnosed

My mom didn’t know the signs of diabetes. No one in my family had diabetes. I had symptoms similar to the flu: fatigue, thirst, weight loss. Little did I know that my pancreas stopped producing insulin. I was slowly dying and by the grace of god I managed to get diagnosed just in time. I now needed insulin injected into my body for the rest of my life in order to sustain life. It’s easily misdiagnosed and many die because so many people including doctors are misinformed about this disease.

I was 12 years old! No, nothing I ate caused this. My mom cried and blamed herself thinking she caused this. The stigma is that diabetes is self induced. That if you live a healthy, active lifestyle you’ll never get diabetes. THAT’S FALSE. I was diagnosed at 12 with type 1 diabetes and my life changed forever. It wasn’t funny then and it’s not funny now.

I grew up hiding my diabetes.

Kids at school would make fun of me. I didn’t want to be different. “Oh did you get diabetes from eating too much sugar?” “I heard if you eat a balanced diet you can cure it.” I’ve pretty much heard everything you can think of. People have laughed in my face about my own disease. But nobody knows what happens behind closed doors. They think it’s a “food” disease. Well that insulin I need to stay alive, also can potentially kill me. It’s a 24/hr job to stay alive.

Unless you personally experience diabetes and it’s many affects you just won’t get it. I understand that. There’s been many times where I’ve gone unconscious from a low blood sugar, I’ve had a seizure, I’ve been hunched over in pain from DKA (where my body wasn’t receiving enough insulin). I would do anything to cure this disease. To get rid of this monster. To not have this disease inflicted on anyone, not have the fear of losing limbs or damaging organs, and not have the fear of suddenly dying.

This all seems harsh and dramatic.

But unfortunately it is.

Yes, life is tough. But so is diabetes.

I don’t let this disease define me.

But I sure won’t let others define my disease as something it’s not.


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Finding My Purpose By Educating and Helping Those Affected By Type 1 Diabetes

Finding My Purpose By Educating and Helping Those Affected By Type 1 Diabetes

By: Ali Dugger

I have taken over 20,500 insulin injections over my life so far. That’s a lot of syringes. I’ve pricked my fingers about 30,000 times. It’s what we as Type I Diabetics must do to check our blood sugar. Now I only need to prick my fingers twice a day. I wear something called a continuous glucose monitor. My CGM is usually worn on my arm. I’ve pretty much decided it officially makes me half cylon.

The day I was diagnosed was July 10 of 2003, ten days after my 18th birthday.

During that summer, after my high school graduation, my days were filled with lifeguarding, zipping around town in my T-top, white, 1998 Camaro, wakeboarding on Lake Travis wiping out every other turn, and a steady diet of pizza.

I had not been feeling well on that particular day. My mother said, as she always did when one of us was feeling ill, “Test your blood sugar.”

She had been a nurse for eight years already and had been caring for my TID younger brother for about ten. With eyes rolling, I dragged my feet downstairs to do the obligatory finger stick to humor her. Earlier I had devoured some pepperoni pizza, a slice or two of chocolate cake (Carinos’ chocolate cake which is the BEST in the world), and had washed it all down with half a bag of sour patch kids.

Usually I would fake it and call out, “It’s FIIINE, mom, 98!” but this time I sensed I should follow her advice. The meter counted down the five seconds and read, 480. I guffawed to myself thinking I must have had sugar on my finger from my candy craze earlier. So, I tested again. It read 485. I stumbled into the living room and collapsed on the floor letting out a wail. My mom flew down the stairs. The look in her eyes was enough to register she already knew the answer to why I had sounded such an alarm.

Within moments my brothers and father were surrounding me. We all wept. It wasn’t just a few minutes after that the doorbell rang. It was my first date with a boy I had met on the fourth of July. I opened the door and dramatically sobbed, “I have diabeteeeeees.” Before he knew it he was loaded up into our family car, all six of us packed in tightly, and carted off to the hospital.

Type 1 Diabetes is also referred to as Juvenile Diabetes. Only 5% of diabetics are TID. The disease is caused not by diet and exercise rather the immune system turning on the body and killing off the insulin producing cells in the pancreas. Most people are diagnosed under the age of twelve. My brother had even joked that since I was no longer a child, being 18, I was in the clear of ever being diagnosed. To this day I am a firm believer in knocking on wood.

When we discovered my brother had TID I was terrified. He had slowly been wasting away (TID prevents your body from storing fat if untreated) for over a year. My parents had been seeking answers everywhere from the city’s best pediatricians to homeopathic doctors. It wasn’t until my father took him to the ER refusing to leave that they did something. His son was obviously at death’s door.

My brother was only six. Being three years older than him, my mom trusted me to stay home alone with the neighbor boy (I hadn’t gone boy crazy yet so she had no idea what was in store for her down the road). She raced off after them to the hospital. It wasn’t too much later in the day she called home and told me the news, “Your brother has diabetes.” I hung up, looked at the boy, leaned my head on his shoulder with tears in my eyes and said, “My brother has rabies!”

As the years passed diabetes became a part of all of our daily lives.

From time to time I would overhear my mother’s fears about his future and all of the complications TID can cause. It was terrifying and I believed the universe had spared me because lord knows I loved flip flops and couldn’t imagine having to wear tennis shoes all of the time (feet are a big issue with TID due to how it prevents wounds from healing). One of my first thoughts when I was diagnosed was how screwed I would be because I ran around outside like a wild banshee all day.

Even though my life had changed dramatically, I still moved into my university dorm that fall. I also still lived life as if nothing had changed. Halle Barry is a TID and I heard an interview where she said it took five years for her to get it down pact. So I thought, “I’ve got five years until I’ve gotta figure this thing out.” Five years passed, then ten, and even though I had a mother who begged, pleaded, and prodded me to take better care of myself, I always waved her off saying, “Mom, I’m perfectly fine!” I would test my sugar every now and then, take my shots hours after I ate, and sometimes would altogether skip my insulin. I felt and looked like a healthy person! I also ate like a superstar and was a yoga instructor (and we all know yoga cures everything in India).

My complications began to arise a few years ago.

It happened so slowly it snuck up on me. At the time, I was a middle school teacher. I attributed my exhaustion and fatigue to stress and managing a classroom of 34 students. Eventually I went to the doctor and I was told I had a leaky heart. They recommended I reduce the stress in my life and really take my TID seriously. I resigned from teaching the next day.

But, that still did not move me to get my act together completely. There was a sense of procrastination when it came to accepting my TID just like most of us do when it comes to going to the gym. Every day I would tell myself, “Oh tomorrow you’ll test your blood sugar at all of the right times and take the right amount of insulin.” It wasn’t until 2016 when the gravity of my situation hit me.

My health was suffering to the point where I couldn’t hold down a job.

My relationship of several years had deteriorated. I had a sense of dread and despair clouding my mind every day. I was confused. I really had no complaints in life! Why was I suffering on the inside so much?

Well, let me tell you. Uncontrolled TID messes with everything, even your hormones. My body was imbalanced from head to toe and it was screaming in every way possible for me to do something about it. Many mornings were spent with my head in the toilet after sleeping on the bathroom floor all night. I experienced uncontrollable bowels while out dancing with my friends (oh do I have some spectacular stories about that!). I kept my apartment at a cool 55 degrees because I felt I was about to combust half of the time. I drank gallons of water daily and looked as if you could blow me a kiss and I would fly away. Some days my vision would be so impaired I would have to pull over on the side of the road and practice squinting until I could see well enough to drive again.

My boyfriend and I eventually broke up and I moved out to LA back in with my parents. I planned on staying with them for a few months while I looked for a new job and place to live. Little did I know 2016 would be the toughest, roughest year of my life.

Every person experiences diabetes differently so I won’t go into the details of what I endured. However, I will share that I spent about a quarter of that year in the hospital, and the other three quarters holed up in my bedroom buried under my blankets. All of my complications came pouring out of me like the Hoover dam opening its floodgates. Gastroparesis, Retinopathy, Neuropathy, and then some really off the wall complications such as Dupuytren’s Contracture started filling up my medical records. I became incredibly depressed.

But soon I buckled down, turned it around, and started to change my daily habits.

Towards the end of the year I had nearly done a 180 degree turn around. To celebrate, I decided it was time to start dating again! So of course, not knowing how to really go about doing that, I signed up for Tinder. I went on a few dates here and there but there was one date in particular that would change my life forever.

I can’t even tell you his name. But I can tell you what kind of motorcycle he rode, a Triumph. It was 9:00 at night and I was feeling restless. We had briefly chatted on text and he mentioned he was going for a ride around LA to check out the skyline. Giggling, I replied, “Why don’t you come pick me up, Night Rider?” and he did. We rode around LA for about an hour. I clasped tightly to him as we raced down the 405. I realized quickly over In-and-Out this was not a crazy Irishman I could ever see myself taking seriously.

He dropped me off back home and said cheesily, “You’ve inspired me to be a better man. May I kiss you?” I promptly said, “No.” (demurely of course) referring back to my Tinder caption OLD FASHIONED. He rode off into the night and I made my way up the old rickety brick steps to our house.

It wasn’t until I was showered and in bed that I noticed my sheets were wet. “What in the world?” I thought annoyedly assuming one of the dogs had dragged some slobber coated toy under my sheets. But to my horror, it was my feet! They were leaking fluid like water faucets.

The podiatrist would tell me two weeks later (yes I waited that long to see the foot doctor. Neosporin and gauze does NOT do the trick) that I had third degree burns down to the bone, even exposing some tendons in my toes. I had burned my feet on the Triumph’s tailpipes and had not felt the heat due to my already existing neuropathy.

I didn’t walk for nearly four months. I’m a gamer so I thought, “Perfect! Now I can hit level 60!” I saw the situation as a little break from adulting for a bit. So, when the doctor gave me the okay to walk again I was feeling even more ready and refreshed to get out there, get employed, and finally move into my own place.

My first day out on the town I headed to the mall to buy my interview outfit. I had just landed a dream job opportunity at a gaming studio and couldn’t wait to impress the recruiter. It was only after about two hours that my feet began to ache. Assuming they just needed a break, I went ahead and called it a day. The next morning my feet were black and blue. Still, I wasn’t worried. However my mother, true to form, made an appointment with my podiatrist the next day.

I knew everyone very well at the doctor’s office by that point and sat in the patient’s chair giving the tech advice about how to smooth things over with his wife, “Foot rubs fix everything and you’re the master at cleaning mine!” I said as he scrubbed my feet. Within a few minutes the doctor flew through the door in a rush and was in his stool poking and prodding at my feet. There was a quietness about him that usually didn’t stiffen the air the way it did that afternoon. He smacked his lips together and said,

“Well, we need to get X-rays.”

I was planning on going on a blind date immediately after my appointment so I hobbled off as quickly as I could. Before we left I mentioned I had plans. The doctor said he preferred if I didn’t go unless the guy looked like Brad Pitt (which he didn’t so, that was a no go). It was only a few days later the doctor sat my mother and me down and mentioned something that sounded like, “Shark Hot Foot” which I found really funny. It’s actually not really that funny.

Charcot Foot is a very rare condition that affects people with diabetes.

It is an autoimmune disease which causes the bones in the feet to break when one walks on them. Doctors don’t know much about the disease except for the fact that the circulation pumping through the bones causes them to splinter and crack from within during acute episodes. Acute episodes occur when the immune system decides to go Rambo and attack the feet. Medical professionals still do not understand what triggers a “flare”. It’s during these episodes that the bones break and crumble. Healing can take months and a lot of people find themselves wheelchair bound. Most only have Charcot in one foot. I have it in both.

Now, here I am.

I’m currently in a wheelchair but hope to someday walk again with the aid of orthopedic shoes and a walker.

It did take me a few weeks to process this news. I probably (most likely definitely) still have a lot of processing to do. However, the moment I realized how life changing this condition would be I closed my eyes and thanked my lucky stars. I thanked the world for preparing me in 2016 in a way nobody or nothing could have. If it had not been for all of my trials and tribulations I don’t believe I would have had the strength to accept such life altering news. I now know that all of the pain I have endured was to prepare me for Part II of my life, which is already filled with wonder and awe of the community of people I’m discovering who live with disabilities every day.

In closing, if you were to ask me for one piece of advice after everything I have been through so far, I would say, “No matter how terrible it may seem right now, know you are being prepared to do something great.” I have never recognized my purpose as fully as I do now. And that purpose is to help, even if it is just one person, but hopefully many people, to understand TID and its complications and to see that life can still be an amazing thing to live.

If you are a TID, or you’re the loved one of a TID,

you’re courageous, you can do this, and I will always be here if you need someone to cry with, vent to, or just ask a simple question. As my favorite poet of all time would say, “Let the great world spin for ever down the ringing grooves of change.” – Alfred Lord Tennyson


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Diabetes Won't Stop Me From Living

Diabetes Won’t Stop Me From Living

Diabetes Won’t Stop Me From Living

By: Nickie Eckes

I have type one diabetes. I was diagnosed back in February of 1990, at 5 years old, because my body decided it wanted to wage war upon itself and destroy the beta cells in my pancreas.

I remember going to the hospital, and I remember being terrified and having no idea why all these doctors were “torturing” me. I just wanted to go home with my mom, dad, and brother. They said my blood sugar was over 1000 and I had to stay.

The weeks that followed in the hospital were not fun. I had gotten used to getting up and playing and running on stop. Now I was being told I had to live on a strict schedule, only able to eat a certain amount of food at certain times, along with a shot of insulin to ensure that my blood glucose levels were maintained.

They also informed my parents of a place called Camp Sioux, a camp for kids living with diabetes to go and have a “regular” camp experience, but also learn about diabetes. I loved going and it made me feel not alone because everyone was diabetic, and I made some lifelong friends. The type that understands me when I just need “a minute” or “a snack” and understand all those diabetic jokes that make my stomach hurt from laughter.

I’ve dealt with the highs and the lows of this disease now for over 27 years. I’ve handled people telling me if only I would take better care of myself, I wouldn’t be this sick. I did nothing wrong to get this illness, it’s an autoimmune condition. My body can’t make the hormone insulin, which is what is needed for the simple sugars you get from food to enter your cells for energy.

I have to calculate everything I do in a day, from what I eat, to how much I’m going to be moving, along with stress levels and illness (such as common cold or the flu) just to ensure that my blood glucose level stays within a good range and I don’t pass out due to a low blood sugar, or go so high that I get diabetic ketoacidosis (meaning your body is producing a thing called ketones and those can make you very sick). And what works one day may not work the same the next day.

I had the years of rebellion and not caring what my numbers were. I did the whole I’m gonna die young anyway so who cares. And then I decided, I wasn’t going to let this disease keep me down. My friend calls diabetes livebetes because he says “it won’t stop me from living!”

 

Research has made many amazing developments since then, so much now that newly diagnosed people are being told that not much in their lives has to change; they just need to know where their numbers are and how much insulin flow take for those different numbers. We can even program those numbers into a pump and have it do the dosing for us (although not completely without thought from us).

We now have faster acting insulins that instead of having to wait 30 minutes after taking them to even start eating, we now only have to wait 5 minutes. We have what is called a Continuous Glucose Monitoring system (or CGM for short) that can tell us our levels every five minutes, which helps a lot given it can predict a high or a low before they occur, and we can correct the issue before it becomes an issue.

In fact this year, with any luck, I will get to obtain the new diabetes pump, with the first ever closed loop system on it! Both my doctor (who is also diabetic) and I are rather excited for this and are not so patiently waiting. There’s still always planning and calculating everything. It helps, but it’s not a cure. All of these advancements sound amazing and are fantastic, but it’s still a heavy load to carry.

Diabetes Won’t Stop Me From Living

I will keep fighting. I am strong. I hope to one day be able to say “I used to have diabetes.” And because of all this, I remind myself while I may have diabetes, it does NOT have me.


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The Little Girl With The Sugar Diabetes

The Little Girl With The “Sugar Diabetes”

The Little Girl With The “Sugar Diabetes”

By: April Langston

Hi, my name is April and I was diagnosed with Type 1 diabetes when I was only 11 months old! Yes, you read that right 11 months! It was winter at the time and I was sick, the doctors kept telling my mom that it was just and ear infection, or just normal flu things that little kids get. They told her she was just an overly worrisome first time mother. Time passed and I continued to get more sick by the day until eventually, I wasn’t able to even recognize my own family.

At that point my parents rushed me to the doctor, my mom said that when the doctor was checking me over he immediately smelled a sweet odor from my diaper.. aka ketones. From there I was rushed to the hospital and then life flighted to KU Med. At KU I spent 11 days in ICU where my family learned how to check blood sugars, give shots, and count points (now known as carb counting). SCARY times!

Throughout my whole life there have been several people that don’t understand what diabetes is and to them I have been known as the little girl with the “sugar diabetes“. You know that kind that doesn’t make you fat, but the kind that you can’t have any sugar. Those of you with diabetes can relate to this I’m sure.

I am now a healthy 26 year old type 1 diabetic! I have gotten married, had two successful pregnancies with diabetes and have had the opportunity to work with other children going through the same struggles. I just celebrated my 25th diaversary!

There has been many ups and downs along the way. Teenage years were especially hard with diabetes. But I made it through. It’s a continuous battle daily, a battle that not everyone understands. Battling the shaky lows, the high blood sugars that make you irritated, the endless needles, and supplies, and blood sugar checks.

The battle is never ending. But we do it anyway. I fight not only for myself but also for my kids, my husband, my family, and friends. This disease may be part of my life, but it will never beat me. I will continue to fight day after day until there is a cure!

I think it is extremely important to raise awareness and to get the facts out about Type 1 diabetes. I also think it is important to know there are others going through what you are going through and that you have support!

With that being said….

To the worried mother or father of a diabetic not old enough to manage the disease themselves, THANK YOU. Thank you for being the rock that gets us through the day. Thank you for the sleepless nights and the endless worrying. Your hard work doesn’t go unnoticed.

To the fed up teenager that is just over it.. hang in there, I promise you one day it will get better. Do what you’re supposed to do to take care of yourself and embrace the fact that you are a little different than others around you. It will only make you a stronger person.

To the pregnant type 1 diabetic, constantly worrying about your blood sugars and worrying that you are going to do something wrong. I promise you that checking your blood sugar 10 times a day and constantly adjusting your insulin will soon pay off and you will be more blessed than you ever thought possible. Do the best you can do and know that it is all worth it.

To the diabetic just trying to get through the day. You got this! You will make it, you will kick diabetes butt and you have so much love and support in the T1D community!

Sincerely,
“The little girl with the sugar diabetes”


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Phoenix Rising Out Of The Ashes

Phoenix Rising Out Of The Ashes

By: Colleen Mattson-Goos

A few years ago a friend of mine referred to me as a “Phoenix Rising Out of the Ashes” and after thinking about this for some time I have come to the conclusion that he is right. I have a quiet strength that many people do not see until I feel the need to call upon it. Some have even mistaken this sense of quiet calm as weakness. They are wrong.

Unlike many others who have submitted their stories, I did not have a happy or healthy early childhood. I was often sick with ear infections or viral infections. I did not physically or emotionally grow the way most children do and I wet the bed constantly. I did not talk to people, especially at school, and was held back a grade due to a failure to interact. I did not feel safe anywhere and I just wanted to disappear. I was lonely, scared, and felt worthless.

By the time I was 9 years old I had had already testified in court due to abuse that had occurred in my home at the hands of people who I should have been able to trust. My dad and stepmom gained custody of me at this time and my overall health started to improve. I finally had a sense of security and felt that I was an accepted member of my family. I started to live like a child should, even if still very quiet.

Three years later my sense of security and health came crashing down, and my family was thrown into yet another crisis because of me. Or what I incorrectly perceived as my fault.

It was about January of 1984 that I started to feel like something was very wrong but I could not describe it. I was tired all of the time and started sleeping throughout the day, even in classrooms. I went home and slept, I fell asleep watching T.V., or playing with my younger sisters. I was constantly drinking water and was going to the bathroom every 10 minutes. I had always been so tiny that clothing never fit right, so my rapid weight loss went unnoticed by myself and my parents.

I smelled death and even had thoughts about dying, but I still could not put into words what I felt like. How do you tell your parents that everything stinks like decaying matter and that you think it is you? How do you tell them you think you are dying when you cannot even describe what you are feeling to begin with?

On February 22nd I came home from school like normal and went into my room to practice playing my flute. I recall sitting down and putting my flute together, but after that I have no memory. I have no memory of my parents taking me to the hospital, or being in the emergency room. My stepmom later told me that when the nurses put a gown on me I was so thin I looked translucent; I weighed 50lbs and I was 12 years old.

What I do recall is waking up and being told that I am now a diabetic. In the 1980’s they still referred to this as “juvenile diabetes” and they knew it had to do with the immune system but not exactly how. I was told that I now have to take shots every day to live, and I need to test my blood sugar several times a day. I was also to follow a “diabetic diet”. I practiced injecting insulin into an orange and by the second day I was injecting myself and seemingly moving forward.

My early childhood had already set me up for emotional difficulties including eating disorders and suicidal thoughts and behaviors. When I was taught to care for my diabetes what the educators and doctors unknowingly taught me was that I now had the ability to gain weight, lose weight, and even easily kill myself if I wanted to. In my mind this became a covert power and something to cherish. The beast that emerged was my secret friend. Unfortunately by the time I was 19 this friend, in combination of lack of access to care, caused the loss of a baby who would now be 26.

In 1992, after years of quietly abusing myself the way that I did and suffering loss, I discovered that I was pregnant with my daughter. I started to care for myself because I wanted her more than anything one could imagine, and in July of 1993 she was born. She was a perfect, beautiful, redheaded baby. Unfortunately, complications from my diabetes, C-section, and emotions arose and I was placed in ICU for some time.

My daughter went home two weeks before I did, even though she was born early. I had severe postpartum depression from this separation, and such a horrific fear of harming my child that I regressed. I left the hospital under 70lbs after her birth and the Beast was back with a vengeance. I was hospitalized numerous times over the next few years, and once I was placed in psychiatric care. One day when my daughter was about 3 years old, she asked: “Mommy are you dying?” I looked into her face and saw so much fear it shattered my heart. I swore to myself, and silently promised her that I would harness the beast that is Type 1 Diabetes, Diabulimia, and Mental Illnesses.

With the support of my husband and our families, I have seen our daughter up, and I have maintained a healthy weight for over 20 years. I am almost finished earning a Master’s in Library and Information Science with a GPA of 3.972, and I am a Teaching Assistant at the university level. My A1C’s are no longer 12+ and with my CGM, and pump we sleep better at night. Sometimes the beast breaks its chains but the Phoenix always rises to the challenge and my story is not over.


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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

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

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.

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

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.

Know The Symptoms Of Type 1 Diabetes, It Could Save a Life: