Category: Struggles

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

A Positive Outlook Leads To a Positive Outcome

A Positive Outlook Leads To a Positive Outcome

Anita Brown

http://anitanicolebrown.com/


My name is Anita Nicole Brown and I am an 18 year Type 1 DiaBadAss! On November 12th, 2017 I will be celebrating 19 years with this disease and I will be celebrating!

I want to change the perspective of what it means to be a Type 1 Diabetic!

So how do I plan on doing that? By celebrating everything I have learned since being diagnosed with T1D and by bringing attention to this disease so that others can see the strength we actually have!

So my story is simple:

I was diagnosed with type 1 diabetes on November 12th, 1998 (my father’s birthday and an A1C of 28)! Shortly after, I was also diagnosed with diabetic nerve damage in my legs and feet that cost me the ability to walk for about a year!

Now, this was in no way caused by me or how I was taking care of myself. It was later determined that my diabetes should have been discovered in 8th grade. However, it was not diagnosed until my senior year of high school! And because it went so long without treatment, the nerve damage set in.

As you can guess, it was a difficult time! I mean it was my senior year of high school! A time I was to be excited about prom, homecoming, graduation and college! Instead I spent most of my senior year either at home or in the hospital! And I was so afraid that because of this disease, I would not graduate!

But, I do believe I am a bit too stubborn for that to have been the end of my story! See, when my doctors told me it was a possibility that the nerve damage would never go away and I may see permanent damage….. I was not in agreement!

So I kept fighting.

Kept working at getting my levels in order and learning as much as I could about this new disease. And one morning I woke and my nerve damage had gone away! I do not think I can express the feeling of being able to walk, run, dance without help or assistance or pain!

And to graduate 2nd in my class after all that! But that was not the end of this battle with T1D! There was more to come that (at 18) I could not have been prepared for! You see, I also found myself dealing with many failed pregnancies and even a thyroid problem and even more!

It got to the point that I felt that life was not worth living if this was going to be my life! And I did try to end it all. I did throw in the towel! I remember when I came to this decision and I told God (or whatever power above you believe in) that I could not continue. That it was too hard.

But, I also told Him that if I woke the next morning….. I would know I had a purpose. A reason for being. As you can see I did wake the next morning. And I woke with perfect glucose levels! As I saw this I looked up to God and said: “Message received….. Just tell me what You have in store for me!”

From that moment, I knew I was stronger than I had given myself credit for.I knew I was given this disease because I could handle it. I can learn from it and I can grow! And that has been my mission!

I know how hard it is to have this disease. To constantly have to count carbs, make insulin adjustments, keep up with doctor’s appointments and pay attention to what my body is telling me! It is a JOB! But I now confront it with a positivity I did not have in the beginning!

Instead of being angry or upset, I look to find the positive!

And the biggest positive is the fact that I woke up this morning when so many did not! This tells me I have more to do! That my reason for being has not been fulfilled!

So I decided to go even further! I mean why not be a T1D Actress, Model, Action Fighter? I mean who says we can’t do these things and still be upfront about our disease? Still keep people informed! Still spread awareness? When I was 17 and trying to find someone….. ANYONE I could look to, I had NO ONE!

I am the only type 1 in my family so when I was learning and dealing with this….. I felt so alone! Now, I know I am not alone and I love the strength this T1D community has! I want to show the good and the bad with being a type 1 diabetic. And I hope that by showing both sides, the good is what can be seen and looked up to more!

We are so much stronger than we know and give ourselves credit for! We were given this task of balancing our lives around this disease and making it look….. easy even when it is not! But I know we were selected because we have that power….. we ARE that power!

We may never be “normal” and that is a beautiful thing! No one who has ever accomplished anything was considered “normal”! So let’s let be loud….. Let’s be vocal and show this world how DiaBadAss we truly are! We have the power to tell our story…… So let’s tell it!



 

dear diabetes

Dear Diabetes –

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

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


Raising a teen with type 1 diabetes

Raising a Teen With Type 1 Diabetes

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 –

“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

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


 

Studying Abroad With Diabetes

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


share a story


 

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


 

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.


share a story