Category: Struggles

dear diabetes

Dear Diabetes -

Posted on by thediabeticjourney.com

Dear Diabetes -

Photo Credit: David Marcu

Dear Diabetes,

The monster, the nightmare, the thing I never wanted to meet.

Here we are.

Here I am—standing stronger than ever.

Alive, thriving, living beside you.

Day after day.

I’ll admit, I didn’t know that I had it in me.

I didn’t know if I could make it this far.

But you pulled strength out from within me that I didn’t know existed.

You made me who I am today.

Through all the darkness has come light.

I hate you.

I hate something that I can’t put a face on.

I hate that nobody knows how bad this disease really is.

I hate that I can’t fight you off, you won’t go away.

Why me?

I used to ask myself this very question.

What did I do to deserve this?

I’ve been nearly close to death and somehow I’m still here.

You haven’t left me alone, not once.

But even after enduring all the battle scars—I just keep getting right back up, brushing myself off, and keep going.

There’s never been another choice.

The time I’ve spent with you feels like a test.

It’s a fight that’s never ending.

One minute I think I’ve figured you out, and the next I’m completely lost.

I don’t feel like I’m winning but I can’t tell if I’m losing either.

You’ve challenged me to take control and face my worst fears.

You’ve pushed me to the point of breaking, but I never surrender.

I always persevere with whatever strength I have left in me.

I used to be afraid of your capabilities, the unknown, and of all the things I can’t control.

But I’m not afraid.

Dear Diabetes -

You don’t have control over me.

This is my life and I’m going to live it.

Even if that means that I have to dance in the rain.

Sincerely,

Me

 

Diabetes: A Disease That Has Become My Life

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Diabetes: A Disease That Has Become My Life

By: Megan Mckay

Diabetes.

A disease consuming me,
Taking every inch of me,
Destroying any control I had left.

A disease that has become my life,
Making my body ache,
Craving perfection that will never come.

Not eating when you’re hungry,
Eating when the disease tells you to,
Too much insulin,
Not enough food,
A cascade of fatality sets in place.

Do you know what a low feels like?
Where your mind loses control,
Sweating,
Shaking,
Barely surviving as you race to get help,
Consuming anything that’s in sight,
Your only goal,
To save your life.

But,
You eat too much,
It happens more times than you’d believe,
The taste of Ketones in your mouth,
A body getting tired,
Eyes aching,
Mind fogging,
Insulin,
Your body craves it,
So you do as it demands,
You take it,
And oh my,
You just hope it’s enough
(Or maybe you hope it’s not too much),
And they wonder why we don’t have better control.

A constant battle,
From the moment you open your eyes,
Your first concern?
Blood sugar,
Is it too low or too high?
Can I eat breakfast today?
Can I even make it out of bed?
When will it end.

Not many get it,
But I do,
We do,
The battle within your own body,
A fight against yourself to stay alive,
I only hope one day the battle will stop,
The cure will come and the worries will fade,
One day,
I hope you wake up in the morning and do whatever the hell you want do.

~MM

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Raising a Teen With Type 1 Diabetes

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Raising a Teen With Type 1 Diabetes

Raising Ezra, Our T1D

By: Christie Meyers

Who knew that day at the pediatrician, we would be admitted to the hospital a few hours later.

My little boy, 5 years old, bravely getting insulin injections and checking blood sugars fearlessly. He said to his Endo, “okay I eat, my mom gives me a shot and I check my blood sugars. Can I go home now? My sisters miss me”. I was amazed as his ability to accept this new way of life. I thought “we’ve got this!”.

That continued for quite some time. Ezra, my “z man” as we call him, took diabetes head on. He began using an insulin pump at age 6. This allowed for more freedom as he went to play dates and played sports. I could administer a bolus by his meter and he wasn’t interrupted.

We both were feeling so confident; so optimistic.

I read about complications and about kids and adults with Type 1 diabetes refusing to care for themselves. I thought “thank God he is responsible. We’ll never have that problem”.


Now we’re here.

Age 12. Puberty. Entering the teen years. And it’s been a rough two years. He eats and doesn’t bolus. He lies about blood sugars. He doesn’t want to carry his meter when he goes outside. Ezra is tired of having diabetes.

He’s embarrassed of always having supplies with him. He’s overwhelmed by the process and never ending responsibility. And I now think, who can blame him? I’m his mother. I don’t have diabetes. And I hate it. The worrying. The midnight checks. The extra prep that goes into everyday. Counting every carb he eats. Measuring food. Packing supplies.

Watching him go through something that I can’t take away from him. I tell him to be positive. That it’s not a choice he has to neglect his health. But ultimately it is his choice. He’s growing up. I can’t be everywhere and I can’t make all his choices.

I believe in him.

I believe he’s going to be okay. He’s going to find a way to find his focus and to be successful mentally, physically and emotionally. What I see is diabetes affects so much more than the physical. And I’m so proud of my son for being who he is and being able to talk to me about how he feels.

It’s been almost 7 years since our lives completely changed. My Zman is my hero. He’s my little lion. Fearless and brave. And diabetes will not beat him down. He’s going to conquer before it has the chance.

I Have Diabetes -

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“I Have Diabetes”

By: Tiffany Slabbert

“I Have Diabetes”–

A phrase said by a number of people at any point in the day. It is a phrase that can limit you or it can motivate you – the choice is up to you.

In the beginning when I was first diagnosed –

I used to think it was some sort of punishment to be labeled as “the kid who is sick” and all the stigma attached to being diabetic. It was a combination of being slightly teased about being diabetic as well as the half-hearted: “I would never be able to eat sugar” or “Can you eat that?” responses. Or the constant blood glucose readings and injections and having to excuse myself from class or exams to eat due to low blood sugar. All of this somehow caused me to become ashamed of my diabetes.

why managing diabetes is a full-time job

It wasn’t my fault and it was definitely not a punishment –

Yet I felt as though saying that simple phrase “I have diabetes” would cause my world to shatter and fall apart. I felt judged, like somehow I did eat too much sugar or not exercise enough and that’s why I became a diabetic. When deep down I know there’s nothing I did or could have done to prevent this. It’s a disease that can happen to anyone.

It took me a long time to get over this mindset I had created –

It was a battle to change the way I viewed myself, I am not a broken human, but instead I am completely 100% me. Now wherever or whenever I say that phrase, I own it. I am proud to be a survivor and a type 1 warrior!

Be proud of how far you have come, and never give up. You are greater than your highs and lows.

 

The emotional side of diabetes

The Emotional Side of Diabetes

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The Emotional Side of Diabetes

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

The emotional side of diabetes is what I tap into often. Everyone has their own way of dealing with diabetes, and not one way is wrong.. because every journey is different. I’ve had some people tell me that my viewpoints are often depressing or negative. While I do like to share all aspects of this disease, the emotional side is what releases my mind.

Now in real life, besides the lows and highs that come with this disease, I manage pretty well. Or as best as I can (of course) with the lack of a working pancreas. But I wasn’t always doing so “good”. When I was diagnosed at the age of 12, I thought my life was over. I didn’t want to be labeled or seen as different. I didn’t like the idea of the possible complications or sudden death that could occur from this disease. I just wanted to hide, ignore it, and pray it would go away. I was scared, and I had no one to talk to about my fears or doubts. On the outside I looked fine, but on the inside — I was battling my inner demons.

Along the way, many years of only talking about my diabetes to family and close friends — I eventually started this blog. It was my time to talk about what’s not being discussed. To start conversations and show the reality. The things that many struggle with but are difficult to express or understand. I would say I’m living proof that you can go through hell and back and come out of it even stronger. I know there are many people who are going through what I’ve gone through, and I want to share how bright the future really is.

I would say the emotional side of diabetes is harder than the physical. The needles don’t bother me, the blood sugar checks, the long nights, or the constant monitoring of data. What bothers me now is that I have a family of my own and there is no cure for my illness. Now as I’m trying to teach my children about it, I’m also trying to teach the rest of the world through my blog. It’s open to anyone to share how diabetes has impacted them, because someone, somewhere, is most likely going through that RIGHT now.

I think my biggest accomplishment with diabetes is letting myself become vulnerable. Not caring what everyone thinks, embracing who I am, and who I’ve become — weaknesses and all.  I believe by doing this, I’m able to cope with the emotional side, because I no longer fear, I just live.

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Studying Abroad With Diabetes

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Studying Abroad With Diabetes

By: Maria Sweezy

(Sugarfree & Sexy Blog)

This past January, I packed my bags full of my most essential articles of clothing (not enough socks as I later realized), a travel journal, and over three months worth of diabetes supplies and boarded a plane for Florence, Italy.

I was surrounded by exclamations that I was about to experience “the opportunity of a lifetime” and that my “life will be forever changed.” Studying abroad is a big deal. It is an even bigger deal for someone with diabetes. I spent months leading up to my trip on the phone with insurance people, both my current and past doctors, my mom, and my pharmacy. I felt like I left America in a bold attempt at looking like I had my shit together, deep down being fully aware that I had no idea what I was getting myself into.

I have fallen in love with Florence, Italy…as one does. I have never felt so at home in a place in my entire life. My heart sings with joy every time I can sit down in Caffe Notte with a cappuccino and write for this blog, or skip across Ponte Vecchio on my way to class. I sometimes feel as if I could stay here forever. As wonderful as this time has been, diabetes has also been her usual self. Following me around everywhere I go.

Being abroad, diabetes has left me feeling impossibly alone in ways that I honestly wasn’t prepared for.

Although in my day to day life back home in America I am usually the only person I encounter that has diabetes, I have carefully and meticulously built up a safety net around me. I have a support system. I would spend evenings with a boyfriend who knew a great deal about diabetes from witnessing it first hand and also independent research (bless his heart).

I would be at work with coworkers who I disclosed small bits of my disease with, the important details as they would experience moments where I had to step away to treat a low. I would talk about diabetes amongst my close friends in hopes to make it more present in their reality as it is so perpetual in my own life.

I also keep in touch with dear camp friends who I have grown up with, my “diabesties.” Although we are spread out across the country and world right now, we have been able to find a save haven in a group chat where we can disclose details of our personal lives (sex, drugs, gossip, and school life) and countless diabetes struggles. Our secrets, heartaches, and stresses bounce around freely among unbelievably strong, diverse women that truly get it.

Yet still, 7,025 miles away from anything familiar, I do not have that refined support system physically available to me.

As they tell you, this is a major part of studying abroad.

I was prepared for myself to be thrown into a new environment, surrounded by beautiful new things, a different culture, and foreign language. I was not prepared for the harsh and sudden reality that struck me once I realized that glucose tablets can not be bought at the pharmacy or supermarket.

Or the fact that I could pass out on one of these little cobblestone streets due to low blood sugar and I’m not even sure how long it would take the ambulance to get to me, let alone if they understand English. Of course I am not the only person in Florence, Italy with diabetes. It just has felt like that at times.

I have a constant internal dialogue here that is ferocious and frustrating at times. All of my friends I am surrounded by are deep in the sense that we have all thrown ourselves into the unknown together, but also fresh in the sense that it has only been a few months. The type of understanding of diabetes that allows someone without diabetes to have a meaningful conversation comes after months of exposure.

It has been difficult to not have many people to candidly vent to because as much as they are supportive of me because they are my friends, they do not understand my words in a wholesome way. They hear me proclaiming “I am low” or “my blood sugar is high” but they certainly do not know what these words mean on a technical level. They are understanding of the occasional need to stop for gelato due to low blood sugar and embrace these moments with reassuring smiles as their indulgence is also benefitting my health.

I am grateful for moments like this. With time, I have also befriended a local barista who has diabetes and even though our interactions are brief across our language barrier, it is heartwarming to know she exists in moments when I feel isolated within this disease. She also makes the best cappuccinos.

This journey here across my travels, from Italy, to Hungary, to the Netherlands, to Greece, has made me realize more than ever that as a person with diabetes you must be steadfast and tenacious in ways that many people will never understand. You can’t afford forgetful days. You must always be on top of your game, prepared for the worst case scenario.

Diabetes, and the anxiety that can accompany it, will be in your mind because it is inside of you. I have been working on befriending it as best as I can. Learning about it, everyday is different after all, and learning about myself as I go along. I am recognizing at what point my patience breaks, the moments where I feel fearful, and the moments where I feel confident.

I do not think you can love diabetes, it is a monster at times that robs you of time and energy and has taken the life of a friend of mine. I do believe however that you can certainly love your ability to try to control it. A knight may not love the battle, but perhaps he loves knowing his armor will protect him and the feelings of victory that come from championing through the fight.

All my Love,

Maria

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It's Like I Fell Into a Deep Well

It’s Like I Fell Into a Deep Well -

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It’s Like I Fell Into a Deep Well -

By: Krystal Konzal

For the first time I felt completely consumed by diabetes. It’s always been a part of me and to onlookers I have it under control. It must not be so hard, they say. She looks fine. It’s so hard I don’t even know how to tell you.

It’s like I fell into a deep well.

The water creeps up past my neck. Will I make it through this day alive? How do I get rid of these feelings? I’m strong and independent. Why do I feel so weak and longing for someone to hear me. Surrounded in darkness and pain, I feel so alone.


This is when I see a rope. I do all I can to stand on my tippy toes. Reach. A little higher. There, got it. I call this rope faith. God sent it down to remind me He is there, even if it feels I’m walking through hell, trapped in a well.

How will I ever climb out?

Muster all you can to find the beauty in life, do not be consumed by my circumstance, I say to myself. I need to climb out of this well, some knots in this rope will make it possible. I tie the first knot, that was my choice.

My husband helps me tie the next. He loves me, accepts me and is so patient with me. My angel mother, she ties the next. She listens and loves and knows the dread, she carried me through it for years. My father he ties one, because that’s what he does. My family and friends, they don’t know what I do daily to stay alive, but I know they love me. So, they tied one. My nieces and nephews look curiously at me and ask the greatest questions. They make me feel noticed. They tie knots in that rope and allow me to tie a few more because they remind me I am strong and I must show them sometimes we have to fight no matter how hard it is.

Keep going.

I find myself inching my way out of the deep well water. Suddenly the doctors, the nurses, educators and assistants they all surround the well and cheer me on. With their knowledge and supplies they give me strength. They let me know it’s possible and that they will help. I just have to climb a little higher.

Don’t let go.

Finally I see light and I’m above ground. All along life was beautiful, my circumstance, not so much. Surround yourself with support. Find it and fight for it. Climb and tie a knot whenever you can. Connect with others who can relate and they may keep you away from the well.
You may will fall in again, but this time the rope is there and the knots are formed. You must not forget, you know how to climb and life is beautiful.

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Diabetes Won't Stop Me From Living

Diabetes Won’t Stop Me From Living

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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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Phoenix Rising Out Of The Ashes

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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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Never Be Ashamed For Being Different

Never Be Ashamed For Being Different

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Never Be Ashamed For Being Different

Throughout my school years, I hid my diabetes from my peers. I felt embarrassed and ashamed for having a disease that was easily misunderstood. When I went to class I never came fully prepared for a low blood sugar. I wouldn’t check my blood sugar or administer insulin in front of people. If I had to attend to my diabetes, I would do so in the bathroom. The only people aware of my condition was my family (of course) and a few really close friends.

I didn’t want to be treated or viewed differently from everyone else.

It went to such far extremes that I was putting my life at risk at times. Which ironically became even more humiliating when it came down to it. I recall my doctor advising that I should try an insulin pump — which I completely avoided. I didn’t want the looks or stares that came with wearing a device attached to me.

I recall getting teased on one occasion in particular at school when someone saw a insulin syringe in my purse and accused me of taking “drugs”. I simply explained: “no, this is insulin, a hormone that I MUST take everyday to stay alive.

After many years of battling my self-esteem and confidence, the worry of what other people think went away. What it eventually came down to was realizing my health and well being comes before anyone’s perception of me.

I started talking and opening up to more people about my diabetes which then brought on more conversation and ways for me to express myself. I embraced the person I’ve become by sharing what makes me different. Hiding my illness for so long made me feel like a prisoner in my own body.

Now I have an insulin pump and CGM, which I wear proudly. I give myself insulin and check my blood sugars wherever and whenever. And in any given opportunity I try to educate more and more people because I know what it’s like to feel alone and misunderstood.

So this is my way of taking strides to inform the public and let other’s know they’re not alone. And that you should never be ashamed for being different but feel empowered for what makes you unique.

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