Category: Management

manageable disease

Trying To Manage a So-Called Manageable Disease

Trying To Manage a So-Called “Manageable Disease”

By: Amy Waddington

“It’s a manageable disease”. Yes, it’s manageable…but it’s also ugly, hard, and exhausting. From the time he wakes up till the time he goes to bed we think about diabetes, what we’re going to eat, when did he eat last, what are his numbers, why does he look so tired and worn out.

Oh nooo, I hope he isn’t getting sick. Navigating through high & low blood sugar throughout the day is SO much more then the number. It effects his concentration, vision, causes fatigue, makes him irritable, and have daily flu like symptoms, as his blood sugar fluctuates.

Every single day he battles and our days are full with “managing the disease”. Like the moment I suddenly realize I haven’t heard from my son for a couple hours and I’m 45 minutes away. So I check the app on my phone that gives me a peek at his blood sugar and there is no reading.

Not only is there no reading but there hasn’t been one for hours. How terrible of me to not catch this sooner. I desperately try calling him. But he’s not answering his phone, and I’m unable to get a hold of him.

The panic sets in…”is he ok?!?!” Is he passed out needing me to come to his rescue????” That’s the thoughts that go through my head. I call every single neighbor until one finally answers and graciously runs to the house to check on him, all while he is swimming in the backyard with his dogs.

Then there’s having to watch my teenage son turn away food because he wants to maintain his current blood sugar. He’ll sneak treats because all he wants is a piece of candy or a bag of chips. But knows he shouldn’t have it because at the moment he is “too high” and although he craves it, he can’t have it. It’s heartbreaking.

We’ll be enjoying a day at a Theme Park and my son will be under a shade tree because he is down with low blood sugar from all the activity. And now he needs to eat some more, rest and wait for it to go back up again. So he can get his color and life back in him and maybe enjoy a few more hours of fun he desperately needs.

Then there’s me sleeping with one eye open. Constantly peeking at my phone to reading his blood sugar because caring for a child with type 1 diabetes is 24 hours a day and 7 days a week. There are no breaks or end to my worry. So yes, “it’s a manageable disease” but please don’t tell me that because we already know. We manage it every single minute of every single day.

My heart behind sharing about Ashton’s Type 1 Diabetes is to educate people about the disease. My hope is that we would continue to be transparent and authentic while spreading as much awareness as we possibly can. If you know of anyone living with a chronic disease give them some extra grace maybe even take a few minutes to give a high five, thumbs up or take the time to encourage them.


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Nobody Is Aware Of Diabetes

Nobody Is Aware Of Diabetes

Nobody Is Aware Of Diabetes

I wake up today with no saliva in my mouth and a dire quench for thirst. My insulin pump is still giving me insulin. I’m still hooked up to medical devices, but my body is resistant. Maybe due to illness, hormones, or because it’s a Tuesday. My blood sugars are high, much higher than a normal persons blood sugars. I’m tired, fatigued, and the feeling of mortality creeps in. I go to correct with insulin, drink water, and attempt to bring this down. But I know this won’t be the last time I experience this.


But nobody notices.

I spent my day monitoring my blood sugars, calculating and measuring how much insulin to give myself. My dosing is only an educated guess, and I have to make these decisions everyday in order to stay alive. But nothing is ever the same or perfect. I’m constantly on a tightrope, hoping not to fall. I’ll do the same thing every single day but receive different results.

When I go to pick up my insulin from the pharmacy, I get this overwhelming sense of sadness. I realize that the same insulin that keeps me alive comes with a huge price. Insulin is one of the most expensive drugs in the United States, and yet I can’t survive without it. Financially, this disease has crushed me. I’m in debt just for trying to stay alive.

But nobody cares.

Once I get home, I receive a notification that my blood sugar is low and dropping fast. I feel lightheaded, disorientated, and starving for glucose (energy). I go to the kitchen to grab anything I can find to raise my blood sugar. I feel alone, helpless, and I’m fighting to survive. It’s a near death experience, that I’ve experienced many times. A low feels like my body is shutting down. A low enough number could cause me to go unconscious, have a seizure, coma, or death.

But nobody is aware.

The night follows with finding a diabetes joke going viral on the internet. Where it’s mocking the disease, assuming it’s caused by being lazy and eating poorly. This is where I stop and realize that nobody notices, nobody cares, and nobody is aware because nobody actually knows about diabetes.

Nobody knows that diabetes kills more people than AIDS and Breast Cancer combined. Nobody knows that diabetes can be caused by an autoimmune disease. Nobody knows that children are dying from this disease. Nobody knows the overwhelming sense of fear of not knowing if your blood sugar will withstand the night. Nobody knows how it feels to experience the highs and lows.

Nobody knows our desperation for a cure…

…Except the person living with diabetes.
And those caring for them.


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I Won't Go Down Without a Fight

I Won’t Go Down Without a Fight

I Won’t Go Down Without a Fight

(I’m 15 years old at the time)

Brittany, what’s your blood sugar?” My mother asks after I get home from school.

Umm… 136.” A number I randomly blurt out without testing what my blood sugar actually was.

I go in my room and glance over at my unused lancets and test strips. I know what’s it’s there for. I know I’m supposed to take care of myself.

But why aren’t I? Why am I fighting against it?

I go to lay down, I’m tired, and I don’t feel right. I fall asleep…

(A half hour or so slips by)

Hi Brittany, My name is John , I’m an EMT and we’re here to help youCan you tell me what your name is?

“...Brittany“, I reply.

“Great Brittany, do you know why we’re here?”

My diabetes?” As I let out a deep saddened sigh.

Yes, your blood sugar was 19.”

We gave you a shot of dextrose. Please drink this juice and eat this sandwich to stabilize your blood sugar.”

Thank you“, I reply as I’m still very dazed and confused as to what’s going on.

My mother hugs me and begs me “please take better care of yourself“.

As tears fall from her face. I see the frantic look in her eyes.

Once I’m back to full consciousness, it sets in. I melt down. I cry, and this isn’t a normal cry. This is painful and it hurts and all the anger releases from within me in full despair.

The feeling of helplessness, guilt, shame because I feel weak… I feel tested… I feel numb… I feel unworthy of all these extra chances I get.

I feel like I’m letting everyone down… I’m letting myself down. I feel like a failure at a disease I never asked for. Something I could have never prevented.

All I can think about when I take my insulin injections is if I don’t take enough I could end up with amputation, loss of eyesight, kidney failure, heart disease and various complications.

I think about how even if I have great control, there is still a risk. It overwhelms me. I went from having a care free childhood to having a fear of dying in my sleep from a low blood sugar or too soon from complications.

This isn’t the typical “teenage reality”.

I’m sick and there’s nothing I can do to fix it. No denial, begging, or lashing out will make my situation better.

I’m my own worst enemy and the only person who can save me in the end, is me. It’s the most terrifying and debilitating feeling having this burden riding on my back.

It took awhile but this process has changed me. I came to grips with knowing I only had one choice. Which was to fight. So I did. I let it in. I embraced the unknown. I rose above the darkness that consumed me. I continued to get up everyday to fight the same demons that left me tired from the night before.

I went from crawling to walking to eventually running. I didn’t want diabetes to win. I knew that this wasn’t going to be easy. But I knew what was on the line.

I knew I would fail, which I have. It took much trial and error. But I’ve learned to get back up, brush myself off, and keep going. To not let the fear overcome me and dwindle my spirit. To honor and respect the journey, for it has led me to here.

To not go down without a fight…


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Diabetes Rollercoaster

The Diabetes Rollercoaster

The Diabetes Rollercoaster

Yesterday I had a day that was one of many. A day where nothing seems to go right. Where I feel like I’m being defeated. Where I feel physically debilitated and mentally distraught. The days where I don’t feel like going through the motions. Where I feel victimized, more so than any other day.

Almost like diabetes is picking on me.

When even though I feel like I’m fighting my hardest, I have to find that extra bit of strength to fight even harder.

I had a day full of erratic and irregular blood sugars. From hyperglycemia to hypoglycemia. Blood sugars that wouldn’t go down due to insulin resistance, and blood sugars that would come down involuntarily hours later. This is what I like to call the “diabetes rollercoaster” effect.

This diabetes rollercoaster ride isn’t fun by any means. It’s rather exhausting and nauseating actually. It’s unlike normal amusements park coasters, where normally there is some excitement and then an end. However, this rollercoaster has no end and keeps on going. I’m not able to throw away my ticket and get off.

If it couldn’t get any worse, my moods shift constantly as well. The way I feel on the inside comes out unwillingly shows on the outside. I’m frustrated with myself as to why I can’t control this. Why does this disease have the ability to make me feel this way? I wish I could go a day without paying any mind to it. I could turn off all the alarms notifying me, do without thinking, and not feel this heavy burden on my shoulders.

I think what bothers me the most is that diabetes lets you think you have everything under control and then reminds you that you don’t. That even though I can do the same thing over and over again, I may not receive the same results.

I often wonder when will this end, when will I feel normal again? I’ve had diabetes for so long that all of this craziness is second nature to me now. Regardless, I just want off of this ride that I’m on. I want days where I’m not fighting for normalcy, that it’ll just come effortlessly.

When I think about how or why I’ve gotten on this diabetes rollercoaster ride. Having to endure all the highs and lows. That maybe this defeat is meant to push me and strengthen me to push forward. Knowing that the struggle that I’m in today shall pass. All I need to do is to surpass all these obstacles and hang on for dear life. Hopefully, then all of this will pay off one day I’ll be able to get off this crazy ride towards a long-awaited cure.

what living with diabetes feels like

What Living With Diabetes Feels Like

What Living With Diabetes Feels Like

Diabetes is often perceived as a self-inflicted disease. It’s assumed that someone brought it upon themselves by poor eating and lack of exercise. It’s commonly joked about and mocked in conversation with reference to body image and sugary foods.

With so many misconceptions and negative stereotypes, it causes this disease to be greatly overlooked. For those battling to often feel misunderstood and ashamed. From the outside looking in, it may seem that insulin is the solution—however it’s not, it’s my life support. That maybe if I change my diet all my problems will be solved—unfortunately that will not cure my diabetes.

To be honest, I had no idea that I would get sick one day and never get better. That my immune system would attack the insulin producing cells in my pancreas. An organ that I didn’t know existed prior to diagnosis or how important it actually is.

That I would have to work at this every day—whether I like it or not. By testing my blood sugar, taking insulin injections, and balancing what I eat.

Some would say “that seems tough” or “I could never do that“. But they don’t realize that I don’t have a choice.

If they only knew that diabetes is much more than “just” that. Diabetes is much more than what managing it looks like on the outside but how diabetes feels like on the inside. There’s a lot of emotion that goes into it. A lot of thinking, a lot of worrying, a lot of uncertainty, and sometimes a lot of chaos.

If only they really knew what living with diabetes feels like:

It’s that dry, fruity breath and taste in your mouth. Where nothing can quench your thirst.

The brain fog where you feel out of tune with your own body.

The pain or burning sensation when taking insulin to keep us alive. Constantly feeling like a pincushion.

Having scars left that mimic battle wounds. That are placed on the most insecure parts of your body.

The dazed, confused feeling of where am I and how did I get here. This disease not only alters your body but your mind.

The dependency of not only insulin, but medical equipment, devices, meters, and food when we get low.

Guilt that weighs heavy on us. That is carried from our day to day tasks, our mistakes, and wishing we didn’t have to learn the hard way.

Being extra cautionary towards injuries, infections, wounds, and always having paranoia. Our bodies taking longer to heal.

diabetes and the unexpected - diabetes blog week

The pressure builds from the responsibility on our plates. Having every intention to do good, but doesn’t always appear to work out that way.

Patiently waiting for the highs to come down or the lows to come up. How EVERYTHING affects our blood sugar.

The inevitable being present. This disease takes a toll on our bodies and we feel it. No matter how well in control we are.

The blurry vision and the lack of focus.

The anger that seeps through from the rollercoaster ride of blood sugars and emotions.

The tired feeling from doing this day in and day out for so long and trying to stay strong. With no days off and no vacation.

Having the feeling of everything being wrong but having the inability to put it into words exactly what that is.

I Want To Be Cured—Not Managed.

I can still live a long fulfilling life if I take care of myself to the best of my abilities. Knowing things could be much worse. I’m grateful for all the advances in technology and the everyday improvements being made in diabetes management.

But we still need and deserve more—we need freedom from Type 1 Diabetes. The burden to be lifted from our shoulders and our family members. Where we can sleep soundly, not have to deal with the highs and lows, or be dependent on insulin.

If more people knew more about this disease. How insulin is not a cure, how it is life threatening, and what living with diabetes feels like to those battling it every day. Then maybe—just maybe, they will want to help cure it too.