Life with a Chronic Autoimmune Disease: T1D

Type 1 Diabetes
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Have you ever encountered Diabetes in your life? Maybe a family member struggles with Diabetes, or a friend of a friend is impacted by it. There are many forms of Diabetes and they have to do with the production or use of a hormone called Insulin. Some such forms of diabetes are – but not limited to – Type 1 Diabetes (T1D), Type 2 (T2D), Gestational Diabetes, and Latent Autoimmune Diabetes in Adults (LADA). While all forms are different and important to learn about, for now we will be focusing on Type 1 Diabetes – my own chronic illness.

The Facts of T1D

Type 1 Diabetes or Diabetes Mellitus is a (normally) juvenile Autoimmune Condition. This means that the immune system has attacked a part of the body – in the case of T1D, the Pancreas’ Beta cells. These cells produce the hormone known as Insulin, and are attacked and destroyed over a span of time resulting in an Insulin deficit. Insulin is literally the “key” that lets the food and nutrients you consume and digest, out of your bloodstream in order to feed your body. When Insulin can no longer be produced because the Beta cells have been destroyed, the blood glucose(BG) or more commonly known as blood sugars, which is regulated by Insulin, is no longer able to be controlled and builds up in the bloodstream. This creates high BG levels, wreaking havoc on the body. High BG can impact kidney function, eye health, and much more. 

Without Insulin, the BG levels remain high and can cause Diabetic Ketoacidosis (DKA) which is very dangerous. When in DKA, the BG levels are at overload capacity, without any Insulin to help bring them down and fuel the body. The body will then begin to break down fat stores to fuel the body, in turn producing ketones. High levels of ketones in the body are unsustainable and cause great harm to the body. DKA can lead to coma, and eventually death if left untreated or even if not treated soon enough. 

Unless there is another Diabetic in your life, to the point where the symptoms will be understood for an early diagnosis, the majority of the time you will be diagnosed with high BG if not DKA. It is believed that genes combined with an environmental trigger (like a sickness, or a very emotional happening, etc) results in the autoimmune response that causes the attack on the Insulin producing Beta cells of the Pancreas. 

Once these Beta cells reach a destruction level, if you will, where the body experiences an Insulin deficit and blood sugars begin running higher than normal, this is the beginning of diabetes. The deficit in Insulin causes symptoms such as excessive thirst, frequent urination, vision changes and/or headaches, rapid and excessive weight loss, moodiness and irritability, fruity breath, fatigue, stomach pain/nausea/vomiting (also big symptoms of DKA) and an increased appetite. There are more, and as you can see they can be mistaken for other illnesses. 

At this point in time, prevention or a cure for Type 1 Diabetics are not possibilities. There is only treatment. The management of T1D sometimes looks like a cure from the outside, but there is so much more to truly managing Type 1 Diabetes. T1D is also a disease that is highly unique to each person. Your hormones, stress level, excitement, exercise, lifestyle, mental health, support and even food orientation, all add layers to managing this disease along with the type of management. Each person with T1D will have a different treatment plan, ranging from the type of Insulin used, the amount of Insulin used and when, the equipment & technology used, and even the lifestyle that they make!

This can translate to different ways of giving insulin (injections, pump therapy, pens), testing the BG’s (meter with finger poke, continuous glucose monitors) what type of insulin works best, what brands of equipment that are accessible, health insurance opportunities, and more!

Type 1 Diabetes & Me

Lets transition to less proven facts and to A Little More Me.

Let me start at the beginning… I was 12 years old. My parents were away for the weekend on business and I was staying at my grandparents with my 3 younger siblings and trying to manage them so that it was easier for Grandma Mommom. At the time Nicole was 10, Grant was 7, and Alea was not quite a year old. I was a very responsible 12 year old who took a lot on her shoulders already.

I remember being tired. I remember that I had been waking up at 2 am – for at least the previous 2 weeks – to use the bathroom and drink another glass of water before going back to sleep. I remember not having any energy, to the point of, when carrying Alea up their flight of stairs, I would have to stop on the landing and lean against the wall to recuperate and make it up the last part, using the railing to help pull myself up. I remember an increase in appetite, but I wouldn’t be able to eat more than a very small portion before my body said stop.

I don’t remember losing 20 pounds, but I do remember my parents coming home and being concerned because their very healthy, previously 90 pound 12 year old, horse girl who was bucking hay and riding her horse bareback all the time, looked like a bag of bones (Time away will let your sight be true because the picture in your brain will be the healthful version when its changing slowly over time). I remember being constantly out of breath and how every ounce of energy I had had to be put to its own purpose because I wouldn’t have another to give.

I remember my Momma talking to my grandpa as they picked us up (who was a retired doctor) and asking if he thought it could be diabetes – little did I know what that was or the impact I would experience by it. That afternoon my parents took us out to our favorite restaurant, and I couldn’t even eat one bite of my favorite hamburger. That was when they absolutely knew something was very wrong. After dinner was finished and the bill was paid, they took my siblings back to our grandparents and we were headed to the hospital for testing.

I was diagnosed the next day when the blood test result finished and my parents received a call and we were headed back to the hospital. I honestly didn’t understand what was going on, what diabetes meant, or how that would affect me to my very core. It was the beginning of October 2007. At diagnosis, I ended up having lost 20 pounds, weighing in at 70 pounds, my blood sugar was 826 mg/dl, they weren’t sure how I was still standing much less not yet in DKA after the time that had passed. My mom remembers about 6 months before, that I was really sick with something, and thinks that was the trigger that prompted my autoimmune response. There were also some large stressors at the time and I also think those extremely emotional things had a part in it, but that is nothing that can be proven.

I was in the hospital for 3 days — and let me tell you, 3 days is not enough time to take in and learn everything your new life will hold. My parents and I were drilled on counting carbs, calculating the Insulin ratios for food, corrections, and Insulin dosages, how often you can actually dose, why there is short and long acting Insulin, how to give injections, how to take your sugar, how to make sure ketones are not building up, and how to interpret data. We were taught how to give injections, the sites that were viable and the best for Insulin absorption.

But, there was also a lot that they couldn’t teach us, because while the basis of T1D is the same throughout all cases (and even non-diabetic people, basically that we all need Insulin – the key to allow the nutrients we eat to fuel our bodies) each person with diabetes is inherently different. Each is impacted slightly differently by our hormones, have different stressors and handle levels of stress in different ways, each individual has different exercising abilities, and more. As each of those things are different, so they affect diabetics differently and even differently from one time to another.

Getting home, I still didn’t really fully understand what had happened and what “chronic illness” really meant. My parents really bore the brunt of the hard work and stress until I was ready to accept it. They helped me track what I ate, so that we could learn to carb count well, and they helped with calculating the amount of Insulin I needed for the meal and for where my blood sugar was at. I learned how to truly live as a diabetic. I learned that if my BG was high I needed Insulin, and if it was low, I needed to treat it with 15 carbs and wait another 15 minutes to evaluate where I was at then (one of the hardest things in the world and the longest 15 minutes in the world).

I was homeschooled from 5th through 10th grade, and I loved it, thriving there. This also gave me the space to really make diabetes my own. My parents encouraged me in a silent way for me to be myself and make it my own as well, supporting and filling in the gaps as I needed. I wasn’t worried about others’ reactions, I wasn’t pressured by anyone or bullying – which was one of the reasons I started homeschooling in the first place. It didn’t matter what others thought because I already knew the importance and it really became a part of my identity.

I went back to my local public high school for my junior and senior years because I wanted a full diploma and boy was it an adjustment in normal life and even more so factoring my T1D in. After I was about 4 or 5 years into my diagnosis, through my 5 years of college, I did the minimum. I didn’t test my sugars, I blind dosed for meals or if I felt like my BG was high. It was not the best route I could have taken. My A1C – the 3 month BG average derived from a blood test – climbed to around 9 through that time, when my goal was 6.5 or below.

I just couldn’t bring myself to do the work, even though I cared and I wanted to meet my goals to be fully healthy. I am happy to say that after I got married and I made choices to slow my life down some, in the past 2 years I have dropped my A1C to 6.0 and to do this I started using a Dexcom G6 (a continuous glucose monitor – shown above) and it’s been an amazing journey.

When diagnosed with something like T1D, there really isn’t a way to keep it separate from your identity (at least in my experience) because it’s always there. I wake up through the night, and my BG is one of the first things that I think of – and then if I am out of my goal range I dose more Insulin or maybe I will have to eat to raise it. I get up in the morning, I check my BG to make sure I am the best prepared I can be for the day. When I make food, again, I have to check it and dose accordingly. I want to go for a walk with my Golden Retriever, I have to check on my BG and make sure I have a granola bar with me in case the physical activity drops my BG. 

Anything and everything I do is calculated. I try to always be prepared for the worst case scenario, but sometimes, you just can’t do everything perfectly. With T1D, there is no break, vacation, sleep, pause button. It’s always there and if you try to take that break that sometimes you just need, I – at least – just end up feeling sick and unable to actually take that break. Everything I do impacts my diabetes; and diabetes impacts everything I do.

Trying to manage a chronic illness and disease by yourself is almost impossible. There are those that choose that, but I couldn’t do it without my support system in place that I know I can fall back on, and they will help me back to my feet. My Husband is ALWAYS there for me. He never baulks, and is always just what I need. My mom and dad supported me in my own journey to self-management, coming alongside me and creating the environment I needed.

Type 1 Diabetes

The biggest thing for me is keeping a positive attitude. I don’t allow myself to ask questions like, “Why me?” Or even allow myself to wish it was different. I don’t let myself go there because I know that there is no hope in those things. I do know though that I can achieve great control, live a life that is not defined by my diabetes, and not allow myself to be restrained by it. I can prepare. I can adjust. I can work hard for those things that I want to achieve and Diabetes is just along for the ride. While it is definitely part of my identity, I am not defined by it. I define it. 

The 5 Things I Want to Impart

Type 1 Diabetes is NOT Caused by Eating Too Much Sugar

There is a lot of confusion between the different types of Diabetes. Other than the connection of Insulin, they are honestly totally different diseases. Type 2 Diabetes is one of the more common types of Diabetes and so those are the impressions that are linked to all diabetes a lot of the time, and even then, Type 2 Diabetics have their own Unique story and sugar alone doesn’t cause any type of Diabetes. 

Sensitivity is Needed with Diabetes Memes

While they may be funny, diabetes memes can be really hurtful to those who have to deal with any form of Diabetes. Not only can it be hurtful, but maybe we are in that hour where we don’t have to think about it. That joke has a reality for us. Even if the meme has false information, or isn’t correct, Diabetes is a big part of our lives and there’s no escape. It’s really not funny, and definitely NOT a joking manner. The flip side to this is those making the jokes who haven’t experienced diabetes themselves can’t actually grasp what those jokes do and the implication that they hold.

Accepting Educational Opportunities

As I touched on through the first parts of this post, every Diabetic is different and has a unique story that is theirs alone. Coming from a place of learning rather than anything else, regardless of what your experiences have been, will go a long way in making someone’s day better. Even I strive to be better at this with everyone. This is not something that is about Diabetes alone. Anytime you can, not making assumptions about someone else’s life and letting them lead is a good thing.

Type 1 Diabetes is Exhausting

Just like I was saying, there is barely a moment that people with Type 1 Diabetes DON’T have to think about it. It’s never far from our thoughts, to-do’s, and there is always one more thing that we need to do. It’s literally on our minds 24/7 because of all the decisions that are required to successfully manage this disease. 

The Help We Need: Raising Awareness

The biggest help Type 1 Diabetics need currently is the help in raising awareness for a cure and a better quality of living. There are a lot of impacts that I haven’t talked about through this post and they all add into the quality of life we can make for ourselves.

When November 14th roles around help us celebrate the strides that we have made and support the steps that we are taking to make life better – in so many different ways.

Are you close to a Diabetic? What type of Diabetes do they battle with?

Do you have questions? Drop them below in the comments and I will do my best to formulate an answer!

~ Stephanie

Hi, I'm Stephanie!

I am a Wife, Dog Mom, & Lifestyle Blogger who is striving to create the future I want for myself and my family!

> Read more about me here.

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