Category: Support

We Are Never Alone In Our Fight Against The Dragon

By: AJ Cunder

I’ve lived with diabetes my entire life–almost 23 years now, since I was diagnosed at 17 months old. Some days I wonder why the dragon chose me. Some days I wonder why I can’t get my blood sugar to stay below 200 mg/dl, or above 70. Some days I get tired of wrestling this dragon that has come to live inside me.

But then, some days I realize there is more to this beast than meets the eye.

No doubt, living with diabetes is difficult. All of us who have it would probably take a cure in a heartbeat. But there is something about this shared diabetic journey that unites us and bonds us, inspires a community to band together and face this dragon as a team.

I recently attended a JDRF/FARE benefit crab race hosted by Casino Pier & Breakwater Beach in New Jersey where I met a mother and her young son who explained that the day marked seven months exactly since he was diagnosed with T1D. Tylar, was his name.

And it amazed me how strong he was, and how strong his family must be to come out to a diabetes event so soon after a diagnosis. When many might throw their hands up and despair, this family found refuge in community where they can see–as all diabetics can see–that they are not alone.

We are never alone in our fight against the dragon.

I signed a copy of my memoir for Tylar–proceeds from the sale that day went to benefit the JDRF–and I hope in reading it he can see and remember that no one faces this disease alone. Even if it feels overwhelming, there is a strong, vibrant T1D community out there eager to hold each other up.

And so, perhaps that is one good thing that can come of this disease: a bond that unites us in our shared battle against the dragon. To see waves of diabetics sporting their infusion sets proudly, wearing their JDRF apparel, swinging their blue JDRF tote bags without shame reminded me of the fundamental strength of this community and the unbreakable bonds forged in the dragon’s fire.

Diabetes sucks, but the friendships and relationships that come from it are undoubtedly some of the strongest to be found on this earth.


share a story

undercover type one

Undercover Type One

Undercover Type One

-Megan W


I have had Type One Diabetes for six and half years now! It’s been quite the ride. Every day really is a learning experience and I grow each and every time, but the one thing I’ve struggled with from day one is the judgment of others.

Isn’t dealing with Type One enough of a struggle without having to receive questioning glances from others?

From the start I have felt the need to hide my disease so I appear normal to everyone else. I tested my blood sugar under the table at restaurants. I went to the restroom to inject insulin. I would wait until my college dorm mate was out of the room to change my pump site and wear long sleeve shirts to cover the CGM on my arm.

Even as I’m typing these things I’m shaking my head thinking I cant believe I do these things!

But, I do these things because of the looks I get from strangers. As if trying to prevent my disease from causing others discomfort, their discomfort!? As much as the inner boss lady in me doesn’t want to admit it the stares, brow furrows, and uncomfortable glances sting. And as much as I try to let them roll of my back one always seems to slip under my shell. So how to I stop the painful stares and the pressure to hide this already exhausting disease? Educate!

If more people out there understood diabetes maybe those of us in hiding could come out from the shadows.

So I’ve challenged myself to do just that: educate the confused and judgmental! I vow to stop covering my CGM as well as check and dose right in the middle of a restaurant. I would like to challenge other type one’s to do the same. Let’s get this disease out there and teach others what it’s all about so the gazes can stop once and for all.

To top off my challenge to myself to stop being an undercover Type One, I’ve made an Instagram page specifically to share my life with Type One. Not only do I hope to shine light on this disease and teach the uninformed, I wish to provide comfort for other Type one’s. Let’s end the stares for good!


share a story

type 1 diabetes diagnosis

Type 1 Diabetes Diagnosis and The Things They Don’t Tell You

Type 1 Diabetes Diagnosis and The Things They Don’t Tell You


This is a topic I’ve wanted to write about for awhile. When receiving my Type 1 Diabetes Diagnosis well over a decade ago—it was all just a blur in my mind. I remember the significant parts. I remember feeling ill and being told that I had type 1 diabetes. But it was also a moment of sheer disbelief, fear, and confusion.

Being in the ICU with DKA is not a place anyone wants to be. It’s hard to fully process a type 1 diabetes diagnosis in just a short hospital stay. What are the questions that I need to ask? What does this all entail? The doctors and mostly nurses just spilling information and I couldn’t grasp all of it, if any.

At the time of my diagnosis I learned the basics. Which was how to inject myself with insulin or how to have the assistance of my mother. I learned how to check my blood sugar, how often, and what the numbers meant.

But being at the hospital is like having a babysitter. Someone, a medical professional who can keep an eye on you until you leave. It’s when you leave the hospital—that’s when the real work comes into play. And it’s a lot more complex then I could have ever anticipated.

 

Type 1 Diabetes Diagnosis and Things They Don’t Tell You:

 

How Consistently Inconsistent Life Is Now

After I went home I was still in the honeymoon phase and my body responded well to the insulin. But after the honeymoon phase wore off, it was chaotic for many years following. During the teen years not only was I growing but I was also combating hormones. Now I know that diabetes is constantly changing and so is my day to day insulin requirements.

I soon learned how volatile my blood sugars can actually be. That even if I eat and inject myself with the same amount of insulin everyday, the results can vary. It didn’t happen overnight, but over the years I learned how to adjust and find certain trends.

My accuracy is NEVER perfect, but I take pride in making small improvements. Thankfully now I have a CGM (continuous glucose monitor) which helps me keep a closer eye on where my blood sugar is headed before it becomes severely life-threatening.

How Strong You’re Going To Have To Be

I don’t know if I was this strong to begin or I had strength thrust upon me due to necessity. But I’ve become incredibly strong due to having diabetes. I’ve learned to react in life-threatening situations, save my own life everyday, and to embrace the uncertainty. I was never prepared for how strong I’d have to be. It’s definitely not for the weak, and in many ways it has made me the person I am today.

 

How Much Sleep You’re Going To Lose

When I was diagnosed my mother took the brunt of the work. I don’t think a physician has to really suggest “sleep-less” or “wake up at this time” because it’s almost instinctual. As I got a little older I started taking the reigns and I’ve been going ever since.

The feeling of exhaustion never seems to go away. I still find myself 15 years down the line going to bed late or wake up at odd hours. I don’t think it will ever stop. But I do take comfort in knowing that while it has taken a lot from me, I still manage to live beyond it.

 

How To Cope With The Emotional Challenges

There’s a lot more that goes into managing diabetes then the physical stuff. But I wasn’t prepared for everything else that would follow. The frustration, depression, anxiety, sadness, anger, guilt, shame, fear, burnout, all of it. Some has comes in spurts, some even all at once.

One day I can be absolutely fine, and then the next day I can feel utterly defeated. I once thought that I was the only one who felt like this because growing up I didn’t know or talk to anyone that had diabetes. My doctors also never really mentioned how diabetes can affect ones emotions.

I used to think that showing weakness was a sign of failure. That I have to constantly live up to expectations and be judged on how well I’m doing and how I can improve. But what I’ve learned is that I’m still here, and if I’m still here I’m giving it my all. I’ve learned to turn my weaknesses into a strength, share and relate with those going through the same thing, and find ways to help support my cause.

diabetes and the unexpected - diabetes blog week

How To Face The World

When I received my type 1 diabetes diagnosis —I didn’t know what diabetes was. I knew about as much as what most learn on television. But instead of making small or moderate lifestyle changes to manage my condition, my life COMPLETELY changed.

Diabetes is seen as a “fat persons disease”, that someone ate too much sugar, is overweight, and doesn’t exercise. However, I wasn’t any of those things. I learned that I had an autoimmune disease which no one in my family had. I learned quickly how little people actually know about diabetes.

I now was forced to inject myself everyday with insulin, watch the amount of carbs I eat, and closely monitor blood sugar levels. But what was even harder was feeling accepted for my diabetes. I soon learned I wasn’t like other children or teens. It was hard to adjust going back to school, socializing, and being active. People would make jokes or tease me for using syringes. For awhile I felt ashamed for having diabetes and I felt like I needed to hide it.

As I’ve grown older, I realize that not everyone is going to have empathy or understand my condition. And when someone doesn’t understand, it can also make them feel uncomfortable. But what diabetes has given me is the compassion and empathy to understand those who do have diabetes and other health conditions.

I’ve learned to rise above the stigma, the judgment, the cruelty and live out my own purpose. To raise awareness, to bring light to a difficult situation, and to let others know they are not alone.



 

Things Only a Person With Diabetes Would Understand

Things Only a Person With Diabetes Would Understand

By: Rachel Murray


I think the most frustrating part about Type 1 Diabetes is there is no breaks with it, you can’t just turn it off when you’re tired or when your sick of it. You can’t just stop thinking about it because you can’t be bothered for a day.

You can’t just do day-to-day things like eat foods, exercise, shower etc, without taking diabetes into consideration. You can’t leave the house without double checking that you have all your supplies, it’s also trying to find the room for supplies in your bag, finding the time and space to fit spare cannulas, reservoirs, insulin, blood glucose meters, sugar, snacks etc.

It’s pulling out the meter out in public and getting “oh whats that?”, or doing an injection and getting comments like “ah does that hurt?” “If I had to do that everyday I would die haha!”

Or getting told to go do your injection in the bathroom because it’s “disturbing” someone’s meal. It’s the comments you receive like “why don’t you just go on a diet?” , “so you can’t have sugar”, “you don’t look overweight”.

 

It’s remembering that not everyone will understand your disease, and trying not to get frustrated when they don’t understand. It’s frustrating because you can be fine one minute, and then passed out on the floor the next and the fear of falling asleep and not waking up again.

It’s the reminder that you will never live a full life if you don’t look after your diabetes. Doctors say that I could die “earlier” than “normal people”. I may go blind, I may have limbs amputated, my kidneys may fail, plus hundreds of more complications.

It’s the feeling as if you have everything under control, and then it just flips in a matter of hours or even minutes.

It’s the frequent hospital visits and admissions. Its the nagging you receive from your parents and your endocrinologist when you accidentally slip up every once in a while.

It’s the “why me” feeling, “why did I get chosen…”

It’s the having nobody to understand that blood glucose fluctuations can and will affect my moods, and I may not always be able to control it.

It’s the missing out on things, or just wanting to lay around all day because my blood sugars aren’t perfect.

It’s the late nights, getting up every 2 hours or more often, just to check the blood glucose machine reads over 4 so you don’t have a fit in your sleep.

It’s watching peoples disappointment when they see you struggling or not trying.

diabetes and the unexpected - diabetes blog week

 

It’s the disrespectful and frustrating comments that absolutely kill you inside, but you have to laugh it off anyways and pretend it was a good joke, like “Why are you shooting up in public, haha!”… “Oh you’re such a druggo, haha!”… as your thinking to yourself “laugh it off and praying that they will go away and leave you alone…”

As much as I have tried to accept my life threatening disease, I accept that unless the health professionals find a cure for my life, then this is my life forever.

I can’t help it.

I sometimes hate the way I have to live and often think of my life being better if i wasn’t around.

I can’t help think of the two words, “why me”.

I can’t help but think “why can’t my pancreas just produce insulin like a normal person does?”

And then I think…“Why can’t I be normal”.

But this is your life and you just have to keep going.


share a story


 

Diabetes: A Disease That Has Become My Life

Diabetes: A Disease That Has Become My Life

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


share a story


I Have Diabetes –

“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.



 

MercyMe – Even If (Testimony): Story About Type 1 Diabetes

MercyMe – Even If (Testimony): Story About Type 1 Diabetes

As time passes with diabetes, it seems like I should have it all together and that I have answers. But there’s times where it doesn’t feel okay. But you know what – that’s okay too.

After watching this live video about a singer-songwriter named Bart Millard who talks about his son who battles with type 1 diabetes; it really struck a chord with me. It had me thinking about where I get my strength from – which is from my heavenly father. Anyone affected by a chronic illness gets it. It never goes away. No matter the denial, bargaining, or anger – it’s always there.

When the bad days hit – and they do – that’s when I come back to the realization that this disease is serious. It’s not that I could ever forget even if I wanted to. As much as I want “normal” – diabetes doesn’t take a break. The good days are where I experience a glimmer of peace; but this is as normal as I’m going to get.

On those days where nothing seems to go right and I feel that diabetes has won…


MERCYME- EVEN IF “SONG & TESTIMONY” LIVE:


“I still won’t surrender… I won’t bow because he’s worth it. Because deep down even though there’s times I forget who I am – luckily he never forgets me. Regardless of what I go through – he’s bigger.” – (Bart Millard)

After all, where I am today is where I was meant to be all along.

I’m now blessed to be part of an amazing community of people who just get it. We understand the courage it takes to get through each day. We understand what it’s like to now see life through a different lens and a whole new perspective. Together we are not alone in this.

It’s the bad days where my life shifts a little. The days where I feel like I’m being held to the flames – fear of getting burned. Those are the days that I feel the most vulnerable, the most human, wanting answers for all of my unanswered prayers.

Even though I may never receive the answers I’m looking for – I continue to hold on to faith – for that it moves mountains. My testimony being proof that these mountains can be moved.


MUSIC VIDEO TO MERCYME – EVEN IF:


 

The emotional side of diabetes

The Emotional Side of Diabetes

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.


share a story


 

diabetes and the unexpected - diabetes blog week

Diabetes Blog Week: Diabetes and the Unexpected

Diabetes Blog Week: Diabetes and the Unexpected

This year is my first year participating in Diabetes Blog Week. I’m excited to be part of this annual diabetes event and share my perspective.

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Having diabetes for so many years I’ve become accustomed to the unexpected. Diabetes has a way of throwing curveballs when you least expect it. It makes things rather difficult and frustrating at times.

Here are my best tips for when the unexpected happens:

Be over prepared

I can’t tell you how many times I’ve been somewhere thinking that I’m not going to need to change my pump site— and it fails. How convenient, right? So now I just bring everything that I could possibly need “just in case”. Just enough to spare me if anything unexpected happens. It’s certainly more of a hassle to carry around extra weight all the time, but the stress of “what if” is therefore not an issue.

Take a deep breath

I have a way of wanting to control everything that goes on with my diabetes to the point where I’m actually doing more harm than good. When unexpected occurrences arise, I’ve learned to now take a deep breath—and handle it calmly and carefully. It’s taken me awhile to be patient, but adding stress to the situation and making quick judgments only makes it worse.

Ask for help

This is probably the most difficult thing I’ve had to learn to do. I always want to feel like I can handle the world and whatever comes my way. But sometimes when my blood sugars are off—and I need assistance getting my supplies, or a snack nearby. Having an extra hand actually makes me feel more at ease and I’ve learned it’s okay to ask for help.

Create back up plans

I’m not always sure if diabetes will cooperate or how my body will react upon each day. Diabetes comes with a lot of uncertainty and unknown. So of course I think of well “if this happens, I have this plan.” But say, for some reason that isn’t effective—I also have this plan for back up.

For instance, I have a dexcom, but what if I don’t hear my alarm, then my husband will be alarmed and call me or run home to check up on me. Creating back up plans creates a more stable safety net and helps living with this disease a little less worrisome.

Diabetes comes with a bunch of twists and turns, up and downs, highs and lows. But I take what I’ve learned in the past and I apply it to the future. No matter how unexpected diabetes is and the challenges that do arise, I will continue on living beyond it.

It's Like I Fell Into a Deep Well

It’s Like I Fell Into a Deep Well –

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.


share a story