Category: Support

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


 

The Little Girl With The Sugar Diabetes

The Little Girl With The “Sugar Diabetes”

The Little Girl With The “Sugar Diabetes”

By: April Langston

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

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

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

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

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

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

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

With that being said….

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

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

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

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

Sincerely,
“The little girl with the sugar diabetes”


share a story


 

You Are Never Given More Than You Can Handle

You Are Never Given More Than You Can Handle

“You Are Never Given More Than You Can Handle”

By: Amy Payne

“You are never given more than you can handle” — I have heard this many times over my life, and it has never really stuck until this past year. I was diagnosed with Type 1 Diabetes 36 years ago at the age of 6. I never really thought much about it thanks to my amazing family who never made me feel different.

The only thoughts I had were that I would likely have horrible complications and die young from my Type1 Diabetes. Besides those thoughts, I truly did not think too much about it. I lived my life to the fullest thinking I should live a big happy life now because my future was going to be bad and short.

As time went by technology/drugs improved greatly and after living a somewhat reckless no fear life through my late teens and twenties my diabetes changed. All of a sudden I could not feel my lows/hypoglycemia anymore and my no big deal Diabetes had changed.

After a few years of trying to manage the lows with my new husband we moved to Denver, CO and went to the Barbara Davis Center. They told me I had had Type 1 Diabetes for over 25 years and had most likely avoided any major complications (except for my eyes, etc). I started crying right there in the office. Endocrinologists had stressed my whole life the importance of tight control otherwise I would have complications.

They have since changed their way of advising diabetics as they realize the old way of instilling fear of complications did more harm than good. Unfortunately being from the generation of 1980 diagnosed Type 1’s and even after being told I have bypassed most complications I still would rather be low than high and to this day feel the same, ironically it is the lows that threaten my life now.

Let’s cut to 6 years later –

The cost of Type 1 Diabetic supplies have skyrocketed (the US insured populations out-of-pocket costs for insulin increased by 89 percent from 2000 to 2010 for insulin alone) and with the 89% conservative estimate increase of my insulin alone depression entered my life.

I lost it one day at the Barbara Davis Center- United Healthcare was forcing me to change from Novolog Insulin (that I had been on for approx 10 years) to Humalog Insulin (due to their contract with the manufacturer of Humalog, not for the best interest of their clients).

I was so upset because of the forced switch and how dare they when my Diabetes was so hard to control on a strict regimen and now you are forcing me to change insulin because of your financial interest vs my health best interest, I literally had a breakdown in the Dr’s office.

This along with the never ending increasing expenses to manage my Type 1 Diabetes just to simply stay alive seemed too much to handle and the happy and strong Amy had finally broken down after 34 years of being a tough Type 1 Diabetic.

Barbara Davis was amazing and helped me with my depression (by the way Type 1’s are prone to depression due to insulin is a hormone that we inject multiple times a day, the fluctuation of our blood sugar levels makes us feel bad, loss of sleep, stress and the 24/7 never ending demand of our disease). I also have an additional theory that the blood glucose testing numerous times a day or with a CGM every three minutes along with your A1C results contribute to depression in Type 1’s.

You are judged by a number constantly –

(You are high, you are low, you are good, you are bad). It is a constant number that gives a judgement on your control of a disease that is impossible to control and I firmly believe it does a number on your psyche.

I am sure Dr’s would agree with my thesis. It was a relief to know what I was feeling was normal, and it is okay to finally say you know what this is hard, I have a lot to deal with and guess what I don’t feel that great most days!

Yes it could be worse and I could have cancer but you know what Type 1 Diabetes sucks and is really really hard to manage. It is a very misunderstood disease, being confused with Type 2 and people thinking you caused this by eating too many candy bars vs the fact that Type 1 is an autoimmune disease where my body attacked my beta insulin-producing cells in my pancreas preventing it from ever producing insulin ever again.

The misunderstanding hurts –

You hear comments like you don’t look like you have diabetes and you know you can reverse it with diet. NO, you cannot! I am good today. I am tired. I continue to be strong and continue to fight Type 1 Diabetes EVERY SINGLE DAY!

Type 1 Diabetes builds character, strength, and maturity. Every experience, every interaction, no matter how bad it might seem, has the ability to shape you, to mold you, and to help you become the person you were born to be.

And if it seems that life has given you “a lot” to handle; it is only because it knows how powerful you truly are. It wants you to discover the courage, the wisdom, and the strength that lie deep within you.

Type 1 Diabetes does not define me — it has built my strong character to handle anything!


share a story


 

I've learned to take control of my diabetes and not let it control me

I’ve Learned To Take Control Of My Diabetes And Not Let It Control Me

I’ve Learned To Take Control Of My Diabetes And Not Let It Control Me

By: Alejandra Varela

Ever since I was seven years old I was diagnosed with type 1 diabetes. It was not easy at the beginning, since I had no prior experience in regards to this matter, nor my parents, many changes had to be done e.g.(food habits, testing my glucose levels at least five times a day, insulin shots, to mention a few), too much to go through for such a little girl. Even though I never felt alone during this adaptation process, I always had my family, friends and teachers supporting me.

The most difficult stage was the adolescence, by the hormonal changes that affected my glucose levels and emotions. It was like a rollercoaster, hypoglycemia and hyperglycemia (my body felt tired all the time). I had to take responsibility and become conscious about my reactions to people. I learned to control my character (to think before act), and that not everybody would understand what diabetes is.

In the college years, the glucose levels were stable and the HBA1c (6.5- 7.2), but I was still injecting insulin 3 times per day and always at the same hour. Since 2014 I decided to use tandem insulin pump and it changed my life. I can wake up late not worrying about insulin and food schedules, the basal doses are more accurate to my needs, the hypoglycemia and hyperglycemia decreased.

Being a diabetic is a challenge, you need to maintain a healthy lifestyle, is a fight against yourself (trying to keep controlled the glucose levels or eat all the carbs that you want knowing the consequences), is depending on insulin to stay alive, is carrying always glucose and a glucometer on your purse, is to have blood tests (HBA1C, cholesterol, T3, T4, etc.) at least twice per year.

Diabetes taught me to be more sensitive, to know the fragility of human being and that life is borrowed. Sometimes I wish I did not have diabetes, but I cannot change it. I just must accept this and do everything possible to control the disease. The most complicated thing was to change my negative thoughts and my low self-esteem. I do not consider myself sick (everything functions well, except the pancreas Beta cells), I am complete, but I depend on insulin to live.

If you are getting through a difficult time, do not be discouraged. Diabetes is not the end of your world, it is an opportunity to find your inner strength. I know that there are many things to worry about (what would happen if my glucose levels go high or too low? what if I do not get enough medications? etc.), just focus in the present and change whatever is necessary.


share a story


 

Diabetes Has Become My Passion In Life

Diabetes Has Become My Passion In Life

Diabetes Has Become My Passion In Life

By: Austin Fuerst

At the age of two, I was diagnosed with type one diabetes. This didn’t just mean that my life would change, but the lives of my parents, family, and friends as well. As a two-year-old, I clearly didn’t know what was going on so all the credit goes to my parents for taking care of me. My mom and dad were always wonderful with taking care of my diabetes and making sure everything was done correctly, from insulin injections, to counting my carbs.

Needless to say, I was very fortunate. My parents also taught me early on to be independent at a young age, starting off giving myself insulin injections when I turned four-years-old, and counting carbs when I turned six-years old. My parents also taught me to not hide, or to be ashamed of my diabetes. They refused to take me to the bathroom of a restaurant to take an insulin shot, and before every school year, they would have a class meeting with all the other kids and let me explain my diabetes to them; the lows, the highs, and how it all worked. That’s where my love of education comes from. My parents helped ingrain it in me at a very early age.

As I got older, diabetes became more and more of something that was a nuisance to me, with middle school being the worst stage of it. I went into the sixth grade with a new insulin pump; the Deltec Cozmo for those who remember it. It was honestly one of the best pumps I have ever had. The only problem with it was that as a sixth grader, I didn’t have the maturity to us it as it was intended.  I would bolus without checking my sugars or without even counting my carbs. This led to me lying to my parents about what my numbers were. Telling them that they were a perfect 120, when in reality it was upwards of 300.  I could only get away with that for so long because of the dreaded endocrinologist. You smile your way through that because, well, the numbers don’t lie.

When my A1c results came back I was honestly scared for my life. It came back at a 14. I was afraid my parents would be furious at me, and I was right. They weren’t furious at me for having a bad A1c, but they were angry because I had been lying to them about my numbers. That was a big wake up call for me. I realized that the number, whether good or bad, was vital and helped steer me on the path that I needed to be on. After the endocrinologist appointment, I took a break from the pump and went back on shots to bring my A1c down, and get my diabetes back under control.

Through all this time, I attended a summer camp called Camp Sweeney, which is a summer camp specifically for type one diabetics. When I was younger, I loved going just because it was fun. It wasn’t until I reached high school that I realized what the camp was all about. Sure it was fun, but they really opened my eyes to what my diabetes really was. Diabetes was a blessing and something that grew more and more to be a burning passion in my heart.

At Camp Sweeney, they taught us how to take care of ourselves in the “real world”, what was going on inside our bodies, and helped us understand what diabetes really is. They helped spark my dormant love for diabetes education. As I went through high school I became more involved and helped in programs where I was able to go to Children’s Hospital in Dallas, TX. At the hospital, I could talk to newly diagnosed families and their children about diabetes, encourage and give them hope that their life isn’t over- it just got a little more complicated.

I have always been a very active person. Up until my freshman year of college, playing lacrosse was a huge part of my life. Over the last 2 years, my passion has switched to personal fitness and working out . Throughout high school my blood sugars and A1c were always “ok”. It wasn’t until I started getting into fitness, working out and eating right that my blood sugars decided to be amazing! After about two years of working hard, eating right and working out five to seven days a week, my most recent A1c was the lowest it has been in the 19 years that I have had diabetes. My A1c was 6.5 and I couldn’t be happier with it!

Through my fitness endeavors, I felt compelled to find a way to help encourage other T1d’s that diabetes shouldn’t stop them from doing what they love and their passion. No matter if its fitness related or not. That’s when I came up with the idea of Everyday_T1d. My goal is to spread awareness, help T1d’s become more confident, and help them realize that diabetes doesn’t have to control their lives but just be kept on a leash. Diabetes can be a blessing rather than a burden, it’s all a matter of perspective.

Through all of my experiences with diabetes, it took me a while to figure out what I wanted to do with my life. My passion started with music, then it was marketing, and it took me so long to figure out that it was in front of my nose the entire time. Diabetes. It makes perfect sense to do something I’m so passionate about as my career.  I’m currently going to school to receive a nutrition degree with hopes of being a registered dietician and one day, a diabetes educator. Now that I know my path, I am ecstatic to get there. To turn my passion and dream into reality. Diabetes has and always will be a part of me, and I am so blessed to have it in my life.


share a story