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Yes I haven’t written a new blog post for months! Honestly this blog hasn’t been going as I hoped and with only a couple of people reading my last couple of blog posts, it’s been hard to be motivated to keep writing them. But I’m still passionate about educating non-diabetics about life with Type 1 diabetes so I’ll continue!

“She can’t eat that, she has diabetes.” Every T1 diabetic has heard something like that said and it’s not true. Is sugar good for anyone? No. Should we all be trying to eat healthy? Yes. But outside of trying to eat healthy and balanced like everyone else, there is nothing a T1 diabetic can’t eat! Yes sometimes I may choose not to eat something because I don’t want the sugar but I’m not making that choice because I “can’t” eat it! And there are many T1s that will eat anything they want whenever they want and that is fine too!

This is an area that is a big difference between Type 1 and Type 2 diabetes. Many people with Type 2 diabetes are controlling it with diet and they will limit how much sugar they are eating to keep their blood sugar in range. They may opt for sugar free or low carb alternatives in order to control their blood sugar. And since there are more Type 2 diabetics than Type 1s, most people think we all have to eat like a Type 2 and that is just not true.

As a Type 1 diabetic, even if I never ate another carb or sugar, I would still need insulin to control my blood sugar. As long as I take enough insulin to cover the carbs I’m eating, I can eat whatever I want. Since I dose insulin based on the number of carbs and there is often little difference in the number of carbs in sugar free and full sugar treats, I will enjoy the “real” stuff! So although I love the motivation behind offering me sugar free treats or low carb options, if I’m going to need insulin anyway, I’d rather have the good stuff. And sugar free or low carb treats are often just as unhealthy as sugar treats because of what’s added! Sugar is no more harmful to the Type 1 diabetic than it is to anyone without diabetes.

So when it comes to eating, a Type 1 diet isn’t going to look much different than anyone else. We don’t need special food options (except for the fact that we have a higher rate of food allergies ?) and can eat what everyone else is eating. We do need to calculate the number of carbs in what we are eating so we can dose insulin properly so we love when the carb information is available! But other than that, our meals likely don’t look any different than yours. So let us eat cake!

Health insurance battles. They are something we have all had to deal with (at least those of us who are fortunate enough to have insurance). Don’t get me wrong, I never take having health insurance for granted, I lived for many years without it, including the first few years after diagnosis. And honestly compared to many people I know, I have great insurance as far as what they cover and what I pay. But I do have to spend time fighting certain decisions they make. Most T1 diabetics have to pretty regularly. And most of the time we are fighting for what we need to stay alive!

For the last few years, the insulin I use is no longer a preferred brand with my insurance. I am one of those people who easily gets side effects to medications and insulin has been no different. So when I tried my current insulin (Humalog) and tolerated it with no side effects, it was a blessing. Then my insurance didn’t want to cover it anymore. Despite my well documented history of side effects, my insurance decided I needed to try insulins a, b and c before they would approve Humalog but they did eventually approve it. Then two years later, they denied the exception to cover Humalog again and gave me a list of 3 more insulins I needed to try. Thankfully I’d already tried two of them earlier in my diabetic journey (before I had my current insurance). But going through the process again meant a delay of 6 weeks before I was able to once again get my Humalog. But like most diabetics, I keep about 6+ months worth of insulin stockpiled for these kinds of situations! We have to because we literally can’t live without it.

Then there has been my CGM (continuous glucose monitor) battle. The brand I have been on since May has never worked well for me. The readings are regularly inaccurate, not always a lot but enough that I still have to test my BG with a finger prick all the time. I tend to bleed a lot at the sensor site. Even a rep from the company I’ve been with admitted that their brand is probably not the best for me. My insurance covers a different brand but my HMO didn’t have a contract with any of the pharmacies that carry it (CGM and pump supplies are only available through mail order pharmacies). So it’s been a 3 month battle to get all the right paperwork to the right department, for my HMO to understand the problem and for the right person there to find a solution. But today I found out that it has been approved! It is such a great feeling when the hard work pays off ❤️

It is fair to say that most T1 diabetics spend hours each year fighting with insurance to get something needed covered. It’s a part of living with a chronic health condition, not just T1D. But I never take what I get for granted, I choose to be thankful for everything provided. There are still many countries (particularly those with socialized medicine) where insulin pumps and CGMs aren’t covered except in the most extreme situations because they are considered unnecessary. Many T1 diabetics around the world don’t have access to the newest technology to make managing their disease easier. I have a lot of compassion for those people and pray that one day they would get access to what we have here in the US. Despite the difficulties, there is so much I have to be thankful for ❤️

T1 diabetes is an autoimmune disease, where the body mistakenly attacks healthy cells (in this case insulin producing cells in the pancreas). The cause of autoimmune diseases, including T1D, isn’t known, it’s thought to possibly be a combination of genetics and environment and triggered by a virus/illness. T1 diabetes is found in all cultures, all ethnicities, all countries and is one of the oldest documented diseases.

Unfortunately it is very common for T1 diabetics to have other autoimmune diseases. T1 diabetics are at a higher risk of developing celiac disease, thyroid problems, vitiligo, psoriasis and most other autoimmune diseases. 20% of T1D’s have a second autoimmune disease and the rate is even higher among Caucasian women. For many it’s not if they will develop another condition but when. And having two additional autoimmune diseases isn’t unusual.

I have asthma, I actually have had asthma since childhood. Most of the time I have no symptoms of my asthma but illness and wildfire smoke are triggers for me. Over the last few weeks I had both causing a huge flair up of my asthma.

Asthma is extra hard to treat in someone with T1 diabetes because the best treatments against asthma (breathing treatments and steroids) are horrible on blood sugar. And asthma isn’t the only autoimmune disease that uses steroids, steroids are often the best treatment to reduce an acute autoimmune attack. But they cause very high blood sugar which can be hard to control. But breathing is kind of important so whatever is necessary to keep me breathing is most important and dealing with blood sugar fallout is secondary.

It can be frustrating to see BG steadily rise and feel helpless to do much but trying to keep it from going too high. Yes, taking more insulin is the best way to combat the elevated BG but taking double, triple or more the typical amount of insulin has to be done carefully. I was up in the 300s at times and it feels horrible! But thankfully once I finished the round of steroids, my BGs have come back down to normal.

T1 diabetes will always have its challenges but I choose to use these times to be thankful for when things are easier. I don’t take for granted the blessing it is to have each breath. Yes T1D makes life a little harder but it also shows me what I do have to be thankful for.

November is National Diabetes Awareness Month (#NDAM). It’s used as a time to educate and advocate for people with all types of diabetes. The biggest day of the month is November 14 which is World Diabetes Day. November 14 was chosen because it’s the birthday of Frederick Banting who discovered insulin in 1921. Before that T1 diabetes was a death sentence. With modern care, most T1 diabetics have a normal life expectancy.

An account of that day, “Children dying from [T1 diabetes] were kept in large wards, often with 50 or more patients in a ward, mostly comatose. Grieving family members were often in attendance, awaiting the (until then, inevitable) death. 

In one of medicine’s more dramatic moments Banting, Best, and Collip went from bed to bed, injecting an entire ward with the new purified [insulin]. Before they had reached the last dying child, the first few were awakening from their coma, to the joyous exclamations of their families.”

Blue is the color of diabetes awareness and support. On November 14, wear blue in support of the diabetics in your life! If you do wear blue, take a picture and tag me on Instagram @cria_t1d. Please help me continue to spread awareness of this disease and support the people who live with it every day.

Like many diseases, T1 diabetes has its own lingo and language. Here is a guide that will help you talk and understand like a real diabetic!

T1 or T1D = Type 1 diabetes

T2 or T2D = Type 2 diabetes

T3 = Type 3, parent/spouse/boyfriend/girlfriend, someone close to a T1 diabetic that helps with daily care, typically knows T1 diabetes as well as someone with the disease

BG = Blood glucose or blood sugar, the amount of sugar in the blood, a non-diabetic is typically 80-100.

Hypo (short for hypoglycemia) or low blood sugar or “low”= when blood sugar goes below 70. Must be corrected with fast acting sugar or carbs like juice or candy. BG below 50 can be life threatening and going too low will cause seizure and death.

High blood sugar or “high” = any BG over 120 although many diabetics won’t feel symptoms until BG is over 200. Prolonged high BG increases chances of diabetic complications such as kidney failure, blindness and amputation. High BG also brings risk of DKA described next.

DKA = diabetic keto acidosis. High BG causes a build up of toxins in the blood called ketones. If not reversed, DKA will lead to multiple organ failure and death. Unlike low blood sugar which can cause rapid death, DKA is typically slower to develop. Many T1 diabetics are in DKA at diagnosis and require hospitalization. When having sustained highs or when sick, T1’s have urine test strips at home to make sure ketones don’t get too high.

A1C = Blood test run several times a year, it reflects average BG over the past 2 months. It also can be used to diagnose diabetes, particularly Type 2 diabetes. Diabetics used to aim for an A1C under 7 although in recent years that target was lowered to 6.5. Statistics show having an A1C under 6.5 significantly lowers the risk of diabetic complications.

Endocrinologist or “endo” = a doctor specializing in hormones or diabetes care. T1D’s see their endo anywhere from every 3 months to once a year (depending on health group, primary care doctor or insurance coverage), sometimes more often if BG’s are particularly being difficult for the patient to manage alone. Endo’s write a lot of prescriptions for us from insulin and test strips to pump and CGM supplies.

Glucometer or meter = meter that uses a small amount of blood (from a finger prick) to measure current BG. Each test requires a test strip and T1 diabetics sometimes test 10 times a day or more. So we end up with a lot of used test strips. Testing BG also requires a lancet to prick a drop of blood to test. Diabetics are told to change their lancet needle each time they test but T1D’s are notorious for going months or even years without changing lancets! The risk of consequences is very small.

CGM = Continuous Glucose Monitor. Most common brands are Medtronic, Dexcom and Libre. The CGM has two components, a sensor (thin wire) that is inserted under the skin and a Bluetooth transmitter connected to it. The sensor lasts from 1-2 weeks (depending on the brand, a newer brand called Eversense lasts 3 months) before a new one needs to be inserted. The Bluetooth transmits CGM data to an insulin pump, receiver or cell phone. Both real time data as well as tracking data and graphs can be seen and used to make treatment decisions. Alarms can also be set to alert the wearer when BG is outside a desired range (high or low) as well as when it is rapidly rising or falling.

Insulin pump = a device worn 24/7/365 to deliver insulin. Three biggest brands Medtronic, Tandem and Omnipod. Medtronic and Tandem are wired units with a cartridge of insulin in the pump and then a small tube running to the connection just under the skin. A menu on the pump controls the administration of insulin. Omnipod is a pod filled with insulin and attached to the skin. A wireless device (called a PDM or personal diabetes manager) controls the administration of insulin. Insulin pump sites must be moved every three days both to prevent infection and because constant injection in one spot causes the skin to stop absorbing the insulin as well.

MDI = multiple daily injections. T1D’s will either be on a pump or MDI. While I personally think anyone would be crazy to prefer MDI over a pump, there are some T1’s who don’t like wearing an insulin pump and some who like taking a break from wearing it at times, called a pump break.

Basal = the rate of continuous insulin needed 24/7

Bolus = a one time dose of insulin given before a meal or to correct a high

Diabuddy – A fellow T1 diabetic friend

These are just the basic terms used regularly by T1 diabetics. It would be nearly impossible to gather all the terms into one blog post but as you read my blog, you will probably learn more of the lingo. So next time you are talking to a diabetic, you will be better prepared to know the language ❤️

Most people have never heard of Type 3 diabetes because it isn’t really diabetes. It’s a term for those closest to T1 diabetics, parents, a spouse or someone else who is in a daily relationship with someone who has T1 diabetes. They know just as much about the disease and the daily life of living it as the diabetic. So we say they have T3.

Now you may not be a T3 diabetic but there are many ways you can help and support a T1 diabetic in your life. Some diabetics love to feel supported in their diabetic journey and share their life with T1 diabetes. But there are others that would rather their diabetes be ignored and want to be treated like everybody else. They don’t want comments or suggestions or special accommodations and that’s fine. So ask your diabetic friend what they want!

If your diabetic friend is open to you being involved, do everything you can to learn about T1 diabetes. Read blogs like mine or follow sites like Beyond Type One or Diabetes Daily. Make sure you understand the difference between Type 1 and Type 2! Then ask your friend questions about how his/her diabetes affects life. I’ve never met another T1 diabetic whose diabetes acted just like mine, there are always some variances.

Find out his/her favorite low snack (something to eat when BG is low) and carry some in your purse or bag. Offer to go for a walk or exercise together. If you are going out for a meal, ask what restaurants work best. Although T1 diabetics typically can eat anything anyone else can, some places are better at having accurate carb counts or other things that help.

Do ask questions but try to refrain from offering advice. No T1 diabetes isn’t curable not even with cinnamon, essential oils or a special diet. Ask if your T1 friend needs accommodations for food but don’t ask “can you eat that?” While I don’t take offense at being asked that because I know it’s usually coming from wanting to understand, many T1 diabetics will be offended.

I try to be sensitive to others when it comes to doing things like BG checks, infusion site or CGM changes. But there are times (especially with checking BG) that it’s so second nature for me to do, I forget how it can look to others. There are many T1 diabetics that will lick the blood off their finger but I don’t, at least not in public! I do think that whenever possible, discretion should be used. On the flip side, I have to do what is needed to be healthy and stay alive and it’s not always at a convenient time. So if I have to test in front of you and it makes you uncomfortable, please just look away. And no, going to the bathroom for more privacy is not always a good option because there is usually no decently sanitary area available!

You can be a good T1 diabetic friend and we will love you for it! Just as with any chronic illness, there are ups and downs and having understanding friends and family is always helpful. So ask questions and learn how you can best support your T1 diabetic friend.

Before I was a T1 diabetic, I thought that having diabetes meant taking a shot of insulin before eating which is what a lot of people think. Unfortunately that is only partially true and it’s a whole lot more complicated. I do sometimes get asked why I need my insulin pump connected to me 24/7.

There are two types of insulin needs called basal insulin and a bolus of insulin. What most people are familiar with is a bolus of insulin given before eating. Sugar is what cells use for energy and insulin is what the body uses to take sugar into the cell. The liver releases small amounts of sugar 24/7 in order to get the cells the energy they need. So a diabetic needs basal insulin 24/7.

Before the technology of insulin pumps came along, an injection of basal insulin was taken once a day. It is a type of insulin designed to release slowly to match the liver’s slow release of sugar. The problem is that the liver doesn’t release sugar at a constant rate. The liver releases a surge of sugar in the early morning hours to provide extra energy to wake up and get going. High blood sugar (BG) in the morning is known as “the dawn phenomenon.” But not every person has that surge and rates of sugar release can be different in different people, the only thing that is certain is that it’s rarely constant! It can be hard to keep a steady BG on basal insulin since it releases at a constant rate. Basal insulins also have a higher rate of side effects than fast acting insulins, the most common being weight gain.

When insulin pumps came along, they completely changed the game of diabetes management. There is no longer a need for basal insulin, the pump uses fast acting insulin and slowly releases it 24/7 in small amounts every 7 minutes. Different release rates can be programmed for different times of day based on individual need. This more closely matches what a healthy pancreas does. Want some exercise? A temporary lower basal rate can be easily set to help keep from going too low. When sick, a higher basal rate can be set. For women, PMS often requires a higher basal rate (I often need 50% more basal insulin) which is easier to manage with an insulin pump.

While insulin pumps have made T1 diabetes management easier, it still isn’t simple. There are more than 100 factors identified that affect BG, many of them the basal need. Changes in the weather, fluctuations in hormones, being sick, stress, medications, exercising, the list goes on and on! And many times, the cause of BG fluctuations from normal isn’t known. So even the most disciplined and knowledgeable T1 diabetics will have highs and lows. We make educated guesses all day long and hope that BG stays stable. Some days it just doesn’t. An insulin pump is a tool that greatly helps management (and there are more ways it helps too but that’s another blog for another day) but it’s still not the same as having a working pancreas.

The longer I live, the more I’m amazed by our bodies and how God perfectly designed them to work. I don’t remember often enough to thank God for all of the ways that my body does function properly. We are dependent on Him for every breath we take and should be thankful. So if you are fortunate to have a fully working pancreas, take a moment and thank God ❤️

Low blood sugar (BG) is probably the most dreaded aspect of having T1 diabetes. Low BG happens when there is more insulin than carbs (or sugars) in the blood stream. In order to correct low BG, there either needs to be less insulin or more carbs. The most famous portrayal of low blood sugar is in the movie “Steel Magnolias” (1989) and many people are familiar with the catch phrase “Drink the juice Shelby.” It is a fairly accurate portrayal of low BG except that most diabetics I know don’t fight against the offer of help!

Low BG can be very serious and even life threatening. BG under 70 needs to be treated and BG under 50 is very serious and could cause loss of consciousness and seizures. I once had a BG of 28, I don’t know how I was even still conscious but I can still remember how it felt feeling myself slipping away. Just a couple of weeks ago I had a 44 and had to work hard to keep from loosing consciousness, the desire to lay down and sleep is overwhelming.

It is nearly impossible to explain exactly what a low BG feels like to someone who has never experienced it. The best I can explain it is that it’s like being underwater. I can still hear and see but it’s distorted and I feel like there is a barrier between myself and the world around me. It feels like everything is in slow motion and I can’t completely connect with everything going on. The lower BG goes, the more disconnected I feel from my surroundings. I also get cold sweats and am desperate to eat, especially sugar (think your worst sugar craving on steroids).

There are different degrees to feeling the lows. I can usually tell by how I feel if I’m just starting to go low or if I’m going down fast and looking at the data from my CGM (continuous glucose monitor) will help me decide how to treat my low. My lows are often from mealtime insulin hitting me before the carbs from my meal. So most often I can temporarily suspend insulin and that will be enough to stop going lower and allow my mealtime carbs to bring me back up. In these situations I really try not to eat or drink any carbs because if I do, then once my mealtime carbs do catch up, my BG will go really high.

But sometimes I start to go low and feel the symptoms of the low developing and need some carbs to combat the low. My first go to is a granola bar, it’s 19 carbs which is a good amount to start with. A lot of times that is enough to stabilize the fall and usually won’t shoot me too far up the other way. But if I’m going really low, I always have apple juice with me which is quick and effective to bring me back up. But I save it for last because I will tend to go too high. But with how serious a low can be, sometimes I have to choose to do what is best in the moment and deal with the fall out later. And there are always times when I have a low and don’t feel like eating but I have to!

Low blood sugars are dreaded not just because the symptoms feel horrible but because it is so hard to treat it just enough without ricocheting back high. When BG is low, it can be impossible to think clearly or logically which is why it’s important to have a plan in place beforehand of how I will deal with a low. When low, it may only take a minute or two to eat/drink what is needed to bring BG back up but it can take up to 20 minutes for the feelings of the low to go away. It can be really hard to be disciplined to not keep eating because my brain will still be screaming at me to eat even when I know I’ve had enough. And sometimes I’m just impatient for the low to go away and I know the more I eat, the faster the feelings will subside. So although many times I can responsibly treat a low, there are times I have way overeaten and then spent hours trying to get my BG back down. Lows are just hard!

Like all T1 diabetics, I try to be responsible with my lows. But I’ll admit that I have driven when I shouldn’t have because I was too low. In each situation, I thought that I could handle it (because I was only feeling a little low) and I didn’t want to be late. So I treated the low while I was driving instead of doing the responsible thing of pulling over and waiting until the low cleared up. But I know in hindsight, I was feeling too impaired to be driving safely. Thankfully God has protected me in each of those situations but I have felt incredibly guilty for what could have happened. I once again resolve never to drive (or do anything else irresponsible) when I am low and you are welcome to hold me accountable.

No matter how well controlled or disciplined I am, lows just happen. I even had a low while writing this blog post and had to take a break! Sometimes being more active than usual or hormonal changes will cause a low and sometimes they happen for no known reason. They can’t always be predicted or avoided. Having CGM technology that warns me that I’m going low has been wonderful at helping me get out in front of a low many times, it’s a game changer.

But if you ever see me (or any person) look like I’m in trouble, slurring speech, slow reactions, acting strange, don’t wait for me to ask for help (because I might be too off to remember how to ask), offer help! I will always have juice and granola bars in my purse or offer me any sugar you can find. I won’t turn down help if I know I’m in trouble. And never be afraid to call 911 if it looks like I (or anyone) needs help and aren’t responding to your attempts. Low BG can be life threatening and you may just save my life ❤️

Although pretty much everyone has heard of diabetes, many people don’t understand the different types. There are two main types of diabetes Type 1 (previously called juvenile diabetes) and Type 2 (previously called adult onset diabetes). But more subtypes are being discovered, especially subtypes of Type 1. Although all types of diabetes result in high blood sugar (called hyperglycemia), the causes are very different.

Type 2, which is more common, used to be found only in older adults. It is caused by insulin resistance. The pancreas makes plenty of insulin, but the cells are resistant to accept the insulin and use it to lower blood sugar. Type 2 diabetes is caused by genetics and lifestyle choices such as eating poorly and not exercising. Many cases of Type 2 can be reversed by weight loss, a healthy diet and exercise. Type 2 is no longer found in just adults, there are kids and teens now being diagnosed with Type 2.

The exact cause of Type 1 diabetes is unknown but it is an autoimmune disease, the immune system attacks the pancreas destroying insulin production. With the pancreas unable to produce insulin, blood sugar goes high. The only treatment for Type 1 diabetes is injecting insulin either multiple times a day or using an insulin pump. It is not caused by eating too much sugar and it can’t be reversed. Although there is a gene known to influence developing Type 1 diabetes and it can run in families, what exactly causes Type 1 isn’t understood. Some people with the gene will never get Type 1 and many people who have Type 1 have no known family history like me. Type 1 diabetes used to be most commonly diagnosed in kids but it is now found in babies as young as 6 months old (and how could a baby have done anything to cause it?) and adults in their 40s and 50s. I was 27 at diagnosis, an age once considered too young for Type 2 and too old for Type 1.

Because Type 2 diabetes is still far more common in adults that Type 1, adults with high blood sugar who have Type 1 are commonly misdiagnosed as Type 2 initially. There are new subtypes of Type 1 being found in adults, one type called Latent Autoimmune Diabetes in Adults (LADA) which is what I have. The typical course of Type 1 diabetes is a sudden attack on the pancreas which causes a complete loss of insulin production within months. In LADA, the autoimmune attack is slower and causes a slow loss of insulin production often taking years. So it looks more like Type 2 initially and without the proper blood tests run (and which aren’t typically done in adults) it can take years to get a correct diagnosis. There are many stories in the diabetic community of adults who for years tried to reverse their Type 2 diabetes only to finally be diagnosed correctly with Type 1.

In some ways, the treatment for diabetes is the same no matter what type you are. But people diagnosed incorrectly with Type 2 who do everything “right” to reverse it with no success usually feel like a failure. Going on insulin also feels like a failure. And spending years on unneeded Type 2 medications (which often have side effects) can also be harmful. So I do advocate that all new diabetics get all the testing done to confirm type when diagnosed.

It is popular and acceptable in our western culture to make jokes about diabetes. Someone with a huge dessert will joke “I’m going to get diabetes from this!” I don’t think most diabetics would say they are offended by such jokes but there is frustration, especially among Type 1 diabetics, about the misinformation behind such statements. Those of us with Type 1 didn’t do anything that caused the disease and joking seems to make light of the work it takes to stay alive and healthy. Would you make similar jokes about cancer? Many people think that Type 1 diabetics just have to inject some insulin and everything is fine. But as the posts in this blog help you see, it is so much more complicated than that and it’s seriousness is no joke for those who live with it.

I think anyone with any disease will get comments and advice from people who think they understand but don’t. I will never be offended hearing such comments about my diabetes but I will tend to get on my “soapbox” in an attempt to explain to the person the error in their comment. I think it is important to better inform the general public about diabetes, especially Type 1, because the number of diabetics is likely to continue to grow. So next time you meet a diabetic, ask questions instead of offering advice, most people would love to help you understand their disease.

The T1 diabetic community is unlike any I’ve ever heard of or experienced for any other disease. When I meet another T1 diabetic (called “in the wild”), there is an instant connection. I’ve stood for a half hour talking to a stranger after one of us noticed the other wearing an insulin pump or CGM. Many other conversations happen with strangers that are short and quick (“my brother has one of those!”).

I once heard a pump alarm going off when I was visiting a church. Anyone who has worn an insulin pump can instantly recognize the sound of one, especially if it is the same brand! I wanted so badly to look behind me and figure out who it was. After church I looked around but couldn’t determine who had the pump.

T1 diabetes is a demanding and exhausting disease to live with and meeting someone else who gets it is always refreshing. We have our own language and sub culture. We have our own jokes and memes. Being in the T1 diabetic community helps in what otherwise feels like a world where most have no idea the effort required just to live. Sometimes you just need to talk with someone who gets it.

Every diabetic is different but we can usually categorize ourselves into two camps: those who wear his/her diabetic devices publicly and proudly and those who do everything to hide them. I have joined the camp of wearing mine proudly! Now of course there are always exceptions, if I was going on a job interview I’d hide them as best as possible just because that isn’t the setting to disclose. But for the most part, I wear my pump and CGM proudly and accessorize with stickers and tape. If I’ve got to wear them, I might as well try to enjoy them!

There are great organizations that help T1 diabetics connect with each other. JDRF is the most well known although my experience is they have been better helping families with a newly diagnosed child and don’t do as well reaching adults diagnosed with T1 (like I was). Another great organization is Beyond Type 1, they have a large presence on social media and have multiple tools to help connect T1 diabetics with each other online and in person. There are many T1 diabetic influencers on social media and many advocates for T1 diabetic causes such as affordable insulin.

T1 diabetic camps are popular for kids, pretty much anywhere a kid lives in the US, there will be a camp nearby. Now since I wasn’t T1 as a child, I never went to a summer camp but I’d like to try going as a counselor some day. There are also weekend T1 diabetic camps for adults although not as many.

One of the best things I’ve done to survive my T1 diabetes is to connect with other T1s for advice and community. It is otherwise almost impossible to survive and thrive with this disease! If you know a T1 diabetic that is struggling, the best thing you can do to help is encourage him/her to connect with the diabetic community.

T1 diabetics (and the parents that take care of T1D kids) regularly loose sleep at night when BG (blood sugar) just doesn’t cooperate. When BG is out of range, alarms go off and somehow I have to wake myself up enough to figure out why. If my BG is higher than 150, I may be sleeping but I just don’t sleep as deeply and wake up feeling like I didn’t sleep. So I want to wake up when I’m running high so I have a chance to (hopefully) fix it so I can sleep more deeply.

Since almost 1/3 of our daily hours are spent sleeping, having good BG control overnight is important. T1 diabetics always aim for a high percentage of time in range (which our CGM can keep track of). The more time spent in range, the better our A1C will be which in turn indicates the likelihood of experiencing complications of diabetes. So waking up at night to make corrections is important for overall BG control. But sometimes it means a lot of interrupted sleep.

Personally about 1/3 of the time, I have a pump alarm go off during the night for some reason. My worst night ever, it went off more than 10 times and most nights it goes off, it will alert me at least twice. While most of us T1 diabetics have learned (through lots of practice) to get back to sleep pretty quickly, there are always some times when that isn’t the case.

Sometimes I hear my pump alarm but never wake up fully enough to comprehend what it is trying to tell me. I’ve done some really crazy things at night when I’m not even half awake! The next morning I try to figure out what I was even thinking that made me do what I did but usually I have no explanation ??‍♀️. Thankfully it’s always been mistakes that don’t have serious consequences and sometimes funny ones. And then there are the times I wake up thinking I heard or felt my pump alarm (since it also vibrates) but I didn’t.

Sometimes better sleep can happen with better planning. I try not to eat past 6pm so my BG has a chance to stabilize and I can give any corrections needed before I go to bed. Also most nights I remember to check my pump before going to bed to make sure I have enough insulin left to get through the night and that I’ve calibrated my CGM recently. I keep juice and granola bars on my nightstand so if I have to treat a low, I can do it without having to get out of bed.

But even with careful planning, some nights are just rough. So if you see me and it looks like I had a rough night, give me some grace and a prayer that tonight will be better ❤️

Diabetes burnout. It’s a real thing and all T1 diabetics go through it at times. Having T1 diabetes is like having a baby except this baby never grows up and becomes more independent, my “baby” requires 24/7 care for the rest of my life. There are no days off, no breaks, no one to hand the responsibility to for a little while. The occasional nights of interrupted sleep will never end. The weight of the responsibility feels really heavy at times. So as diabetics, we go through burn out.

I’ve been experiencing some burn out this week. There have been times my CGM has gone off that I’m high or low and I’ve ignored the alarms because I just don’t feel like dealing with it. Then I feel guilty that I’ve let myself run high for a while when if I’d just stopped and taken care of it, I wouldn’t feel so horrible. Or I went really low because despite the warning, I just didn’t feel like eating. It really doesn’t take long (maybe a minute or two) to take care of these issues but I’m just so tired of always having to take care of it that I chose to ignore it instead. And yesterday I just couldn’t time my insulin right no matter how hard I tried, so I gave up and let my BG do what it wanted.

Diabetes burnout can vary in length and intensity. Sometimes it lasts a couple of days, sometimes a couple of weeks, sometimes a couple of months. It can be mild annoyance and resentment at having to take care of BG, sometimes it can lead to a complete state of denial of being diabetic and doing nothing to manage it. Sometimes it can lead to complications, it always leads to guilt knowing I’m not doing my best.

Grace. It’s the most important thing to remember during burnout. Does that mean that I should let myself make bad choices and just let myself off the hook? No. But it does mean that I remember I am human and I’m not perfect and sometimes doing my best is to let a few things slide because it’s just too much today. I should always be working to do my best but sometimes I need to give myself a little break from trying to be perfect. And maybe take a long hot bath!

As with every burnout I’ve been through before, I will just keep pushing through. I will reach out to my diabetic community for support. Even when I don’t feel like dealing with the constant demands, I will do my best not to ignore them too long. As I keep pushing through, I will make it through this burnout just like I have every one before. I will not give up or give in to this disease. With God’s help and strength, I will keep on keeping on!

Saying that I’m high is something I will do without even thinking about it until I see a startled reaction and have to explain. For a diabetic, being high has a whole different meaning than it does to the rest of the world and we often forget its other meaning! I have never been high on drugs but unfortunately having high blood sugar (BG) is something I deal with a lot. I also deal with being low, but if I accidentally say that in mixed company, I don’t get quite the same reaction as saying that I’m high!

Being a T1 diabetic is all consuming and it’s common for us to forget that the rest of the world often doesn’t know anything about what our life looks like. For many people, they got Type 1 as a kid and don’t remember what life was like not being diabetic. Since I was 27 at diagnosis, I remember very well what it was like to be “normal” before and sometimes I do miss it. Maybe one day, more of the public will be educated about the life of a T1 diabetic but in the mean time, if you overhear someone saying that they are high, remember that to some of us that means something completely different ?

Food. It’s probably the biggest challenge for a T1 diabetic. We have to count the carbs in everything we eat so we can make an educated guess of how much insulin to take (called a bolus of insulin). But it’s a VERY complex process.

Take insulin too early, blood sugar (BG) drops low before the carbs you ate finally catch up. Take insulin too late, BG spikes and you can do nothing but wait for the insulin you took to bring it down. I also have digestion struggles which means I don’t always know when the carbs will hit my BG and it is different lengths of time for different foods (for any diabetic, pizza carbs notoriously digest slowly). Protein, fats and fiber can slow down digestion and not always at predictable rates. And you can eat a food one time and get the bolus pretty good and it goes all wacky the next time you try!

I tend to eat from packaged food that has a carb count on it because if I follow a recipe and make something, it can be impossible to figure out the carb count in my one serving! Most T1 diabetics hate potlucks because it’s impossible to figure out the carb count for anything we didn’t make ?. Every T1 diabetic owns a food scale and multiple sets of measuring cups and spoons. To calculate carbs, we need either the weight or the volume and preferably a degree in math to figure out the calculations! Siri has been a wonderful assistant as I try to make some complicated calculations ? If you invite a T1 diabetic over for dinner, please don’t be offended if we bring our own measuring cups or food scale or ask to see the recipe!

I’ve had to admit to myself that I’m still scared to eat anything made from “scratch” because I have to guesstimate the carbs. And even after all these years, my guessing is never very good. Guess badly and it can take the rest of the day to try to get BG back on track. So although I try to pick the healthiest packaged foods I can (a lot of Whole Foods shopping), I’m trying to work through my fear of eating something that doesn’t have the carb count clearly marked.

I also have to decide before eating how much I want to eat since ideally I have to give insulin before starting to eat. This also means no eating straight out of the package or “snacking”, I have to portion out first what I’m going to eat. If I start getting full, I have no choice but to finish what I took because I gave myself insulin for everything on my plate. It can be hard to keep eating when full but T1 diabetics have to! And then there is the challenge when a. the food is bad/inedible, b. I don’t like the food and would rather not finish it or c. I’m eating at a restaurant and I have to wait for them to remake something. Any of those situations leaves me scrambling to find something else to eat that is close enough to the same carbs as what I bolused for and hoping I can finish eating before the insulin BG drop!

T1 diabetics develop eating disorders at a higher rate than the general population. Our relationship with food is already far from normal and we tend to group foods as good or bad based on how they affect our blood sugar. We also have our own eating disorder called diabulimia which I myself have struggled with. When BG is high, one symptom is weight loss. So a diabetic can skip insulin and binge eat making BG spike high enough that the weight just flys off. During my worst episode, I lost over 30 lbs in one month. Yes I felt very sick and I was risking my life but the ability to loose weight quickly was addicting. Thankfully I got some help and I haven’t fallen into it again but the temptation is still there sometimes. Since insulin is a hormone and we have to inject so much of it every day, most T1 diabetics have a really hard time loosing weight and sometimes will gain a little weight even when doing everything right!

So T1 diabetics can eat anything anyone else can (even sugar), it’s just a much more complicated process and always requires planning and being good at guesstimating. But on the meals I get it just right, I feel like I won the lottery! It really is the most wonderful feeling to work hard at getting it right and then be rewarded with a perfect BG. That is enough to keep me working at it ❤️