The Night I Almost Died

Like all Type 1 diabetics, for me occasional lows are just a part of life. In the struggle to get the insulin dose just right, sometimes I miss. Unexpected things happen. There are so many factors, some still unknown, that can affect blood sugar and I can do the same thing every day and sometimes get completely different results. 2+2 doesn’t always = 4.

Last weekend I was feeling a little under the weather. Not really sick but exhausted like I’d overdone it and just feeling extra tired. I was at the end of a 3 week job that had consumed more of my life than I expected and I was just tired. Sunday morning I made a very rare decision to not go to church feeling like I really needed the extra rest instead. For reasons I still don’t understand, my blood sugar ran a little high all night, around 170-180. So I eventually increased my basal insulin trying to nudge it back down.

I slept in really late that day, much needed rest. But all diabetics know being out of normal routine can make blood sugar a little more unpredictable. And since I was sleeping in a lot later, I wasn’t watching my blood sugar as closely as normal, watching for it to come down in range so I could reduce my basal insulin back to normal.

Once I finally got up, my blood sugar started dropping. I reduced my basal insulin and ate what was already a late lunch. For the next two hours my blood sugar persisted at 50-60, not low enough to worry me but more of a nuisance that no matter how much I ate, it just wouldn’t come up. These kind of stubborn lows aren’t that unusual and just take some patience. And the normal expectation is that all the correction carbs will finally catch up and there will be a high later. That is what has always happened to me before after these stubborn lows.

When I finally got my blood sugar at a steady 100, I started thinking about dinner. Yes somehow even with all of those correction carbs I was still hungry! And I figured at that point that a normal meal would be good to hold that blood sugar more steady than it had been all afternoon (which is also usually true). Since it was my last night at this exhausting job, I decided on a treat. I ordered a burger and fries from my favorite place since I had a free delivery deal. I wanted to celebrate making it through this long and tiring job.

When the food came I decided that especially with the protein, I wasn’t going to pre-bolus or even give myself insulin when I started eating, I was going to wait until I saw that the food was raising my blood sugar. This was a decision unique to me and my circumstances and something that had worked many times in the past. So I ate my food and watched my CGM for the rise that would come. It came about 30 minutes later and I went ahead and gave myself a bolus of insulin for the 80 carbs of the meal not giving a correction for the 150 blood sugar. Still nothing out of the ordinary, the same thing I do every day and something I had done for this very meal multiple times before that had worked perfectly.

About a half hour after I gave the bolus, I went outside to take care of a few chores. I was still right about 150 and I knew that getting up and moving around would help speed up the action of the insulin I had given but in my mind that was a good thing. The number of things I had to do I felt was the perfect amount to get this meal insulin working well against the carbs. But as I was finishing up outside, I suddenly felt very dizzy and just knew my blood sugar was dropping and dropping FAST!

I quickly rushed up to the house as black spots tried to overtake my vision. I pushed through, grabbed my blood glucose meter and applesauce and laid on the couch. As I quickly downed some applesauce I tested my sugar. 37. While I’ve been lower than that before and still able to manage, something in my gut told me this was different. I really believe God whispered in my ear, “you need help.” So I quickly texted a friend that I was in trouble as I fumbled to call 911.

I remember the 911 operator asking me for my address and I fumbled through talking and trying to get the numbers and words to come out coherently. When she asked me for my phone number I couldn’t get the numbers out in the right order. She finally repeated what her screen showed my number as and I confirmed. Then she asked me the problem and I told her I was diabetic, severely low and about to pass out. She said she would send help and to stay on the line with her. I don’t remember anything past that. I saw later that I was still texting with a couple of friends but I have no memory of it now.

I don’t remember the EMTs arriving or much of their time there but I was told about it later. When they arrived I was semi-conscious able to follow commands but not really aware. They first tried liquid dextrose (sugar) on my gums and in my mouth but it didn’t work. Then they found a Powerade in the kitchen and had me drink the whole thing. My blood sugar still wasn’t getting out of the 30s and I wasn’t regaining full consciousness. They found some cookies and tried to get me to eat some with mixed success. Still I was not coming around and my blood sugar wasn’t coming up. So they started an IV and gave me dextrose right into my blood stream. That finally worked and as my blood sugar started coming up I started becoming more alert.

The first thing I can remember is extreme nausea as I was handed a bag to get sick. The overwhelming amount of sugar they were pumping into me made me extremely nauseous. Then I became aware that my clothes were drenched in sweat, more than I’d ever felt before. Then I saw that a friend was there and they were talking about taking me to the hospital to get checked out. So I was loaded into the ambulance for the (long) ride to the hospital.

It was during that ride (thankfully no sirens) that the EMT talked to me and told me all they had done. He asked me if I knew how close I had come to dying. He said they had real concern about how hard it was to get my blood sugar up. He said he believed that if I had not called 911 before I passed out, I would probably have died. I found out later they had been working on me for 45 minutes never getting me above the 30s until the dextrose IV. My friend at the scene (who got there just after the EMTs) told me how she really felt like she was watching me die.

I did get checked out at the hospital but we still don’t really know what happened that night or why. My insulin pump was thoroughly checked and determined to be working properly. While we will continue to run more tests, it is possible that we may never know why. The human body is immensely complicated and there are still mysteries we don’t understand. Maybe I was fighting a little bit a sickness? But why the carbs from my food never hit my blood sugar that night remains a mystery.

I have lived with this disease for 14.5 years and this situation is probably every diabetics worst nightmare but it was a first for me. And I have learned some good lessons from it. Even as I was dialing 911, I worried that I was overreacting. I worried that the carbs I just ate would work and by the time the EMTs showed up I would be fine and embarrassed that I called them. I was scared that I was making a big mistake calling and it would turn out to be nothing. I almost talked myself out of calling. But since then I’ve learned that if there is even the smallest possibility that help is needed, I need to call for help.

I also learned that if something feels off, even if my analytical brain is telling me everything has to be fine, listen to that feeling. I can’t explain even now what felt so different about this low. I really think it was God placing that feeling in me that something was really wrong and I had to call for help. But it made no logical sense that this low was any different from the hundreds I’ve had before and managed on my own just fine. And I’m very much a logical person and not prone to act by feelings! But if I hadn’t listened to that feeling I likely wouldn’t be alive to write this.

These lessons apply to you even if you aren’t diabetic. If you think there is even a small possibility you need help from 911, go ahead and call! Don’t fear being embarrassed if it turns out to be something minor, it’s far better to be embarrassed than dead. And if something just doesn’t feel right, even if logic is telling you you are crazy, go with that feeling. Again it’s better to be wrong and safe then ignore it and be dead.

While I know it’s going to take some time dealing with the trauma of that night, I will get past this. I will focus on how thankful I am that God is giving me more days on this earth. I will learn to get comfortable again dealing with lows and not fear every low is trying to kill me. I will use my experience to help others know what to do if it happens to them. And just like always I will choose to be thankful even for this crazy scary disease called Type 1 diabetes. Because it helps teach me just how precious life is.

National Diabetes Month

“I feel like my entire life has been shaken up. It’s amazing how much can happen in such a short time. A life can be change forever with one simple word. I have diabetes.”

That was what I wrote in my journal about a week after my diagnosis in 2006. What is interesting is that I journaled almost every day but it took close to a week before I could even mention my new diagnosis in my journal. I have multiple entries after my diagnosis before I wrote this. I was in so much shock that first week that I couldn’t even say the word “diabetes” and I was still pretending life was normal.

It is true that my entire life was changed by that one little word. At the time all I could see was the bad. All I could feel was anger and sadness and denial. I didn’t want this change. I resented the change. And it just felt so unfair! I knew that life wasn’t fair but at the time this just seemed like too much.

Although it’s true that my life changed that day, what I couldn’t see then was the hidden blessings with my diabetes. At the time all I could see is all the things I needed to give up, soda and fast food, my coming home from a long day at work and eating a pint of ice cream, my ability to just jump in the car and go somewhere without needing to plan, I felt like I was losing all the things I loved. That on top of the fact that I hated needles and blood and couldn’t stand the thought that this was now going to be the rest of my life.

I really struggled my first years. I had a doctor that was always upset at me that I didn’t manage my diabetes better. I really wanted to but I struggled with all the changes. I also couldn’t see anything but the rest of my life having to do everything I didn’t want to and no longer having the freedoms I had before. I also struggled because I was misdiagnosed as Type 2 and as I reached out to other Type 2s, they didn’t seem to relate with the blood sugar (BG) management struggles I had.

Finally I found an endocrinologist who not only empathized with how hard it was but was able to find the right insulin ratios for me. He also encouraged me not to try to change all my bad habits at once but tackle one at a time. With his encouragement and expertise finally helping, I was able to get my BGs under control. As I tasted small victories in my management, I wanted more. Slowly I began to see that yes, this was likely my life forever going forward (unless we get a cure ?) but I could do it!

Over my 14 years living with this disease, I can look back and see all the blessings. I had a very poor diet and diabetes forced me to deal with it years before I likely would have. I was able to get needed structure and planning into my life that I otherwise likely wouldn’t have. And in the last few years, I’ve really been blessed to get involved with the social media Type 1 community and not only get a lot of support from others but have been able to help those who are struggling. I’ve been able to take my experience and help others that are where I was in the beginning.

Yes this disease is life changing in a million different ways. But what I couldn’t see in the beginning is that many of the changes are good. Many of them ended up being blessings. So while I’m not sure I can say I’m thankful that I have diabetes, I am thankful for all the blessings it’s brought to my life. And more than anything I’m thankful to live in a time where we have insulin and technology that no longer makes diabetes a death sentence and has made the disease much easier to manage than 100 years ago.

No matter if you have diabetes or some other struggle in your life, always remember to look for the silver linings. I’m completely convinced that no matter how hard the struggle, there will always be blessings too. I’m very thankful that my journey as a Type 1 diabetic has taught me to look for the blessings in all my trials.

Insulin 102

This is a follow up to last week’s blog, if you haven’t yet, make sure you read it first here!

Now that we have talked about what insulin is, how it works and why Type 1 diabetics need to inject it, I realized there is much more info than fit in one blog post! Since insulin is what Type 1 diabetes revolves around, you never can learn too much about it, it’s a key to understanding life with Type 1.

Insulin has come a long way in the last 100 years. In 1920, Fredrick Banting and Charles Best were the first to figure out how to isolate insulin and successfully inject it to treat Type 1 diabetes. The first insulins was taken from cows and then from pigs. These insulins sometimes caused allergic reactions and the volume needed to be injected was huge. It also needed to be injected into a vein which developed scar tissue making it difficult to continue finding new veins to use. And the insulin rarely could bring blood sugar back into the normal range of a non-diabetic and many still died younger from complications.

In the late 1970s, the first synthetic insulins were developed which were closer to human insulin. They also could be injected in any fatty tissue without needing to find a vein. The volume required to inject also went down to about 1/4 of what was needed previously. The development of these synthetic insulins greatly improved the quality of life and lengthened Type 1 average life span to nearly normal.

Advances in synthetic insulins continued, eventually leading to what are now the most commonly used insulins, Humalog and Novalog (and their counterpart long lasting basal insulins). These have been the most stable insulins yet, releasing at a steady and predictable rate and the closest at mimicking human insulin made in the pancreas. There continue to be new insulins that come out, including a new fast acting insulin called Fiasp which starts working within 10 minutes instead of the standard 20. There is also inhaled insulin (although not suitable for all diabetics or all situations) and additional methods besides injecting being studied. Insulin can not be taken orally as it is broken down by the stomach acids and never makes it to the bloodstream.

Insulin must be kept refrigerated. Once a vial of insulin is allowed to reach room temperature, it must be used within 30 days before it goes “bad”. Old insulin isn’t harmful, it just won’t work. Like pretty much all Type 1 diabetics, I go through more than 1 vial of insulin each month so once I open a new vial, I put it with my backup infusion set in my purse. That way if I have a pump failure, I have insulin with me (along with a couple of syringes). But I also have to make sure I don’t leave my purse in a hot car as letting insulin get too hot also makes it go bad!

These synthetic insulins have a very distinct chemical smell instantly recognizable to any Type 1 diabetic. I have become somewhat desensitized to the smell over the years, I’ve been told my room sometimes smells of insulin (where I do most of my pump refills) but I don’t smell it. Sometimes insulin spills happen and getting any insulin on my hands can take a day or two to clear (even with washing them). If you ever want to know what insulin smells like, pretty much any Type 1 diabetic can pull out a vial or pump and give you a whiff. It’s not the worst smell but not pleasant either!

A vial keeper has become a popular accessory for anyone who uses insulin. I have heard many horror stories of an expensive vial of insulin breaking and spilling all its contents! In my 14 years of being diabetic, I have never broken a vial of insulin! I have dropped one a time or two but never broken one. I do not own or use a vial keeper as I still feel relatively confident that I don’t need one. Maybe one day life will prove me wrong!

Insulin is measured in units, a system of measurement not used for any other injectable medication. Type 1 diabetics have multiple ratios and sometimes need a math degree to determine how many units are needed for any given situation. There is a carb ratio (for example 1 unit of insulin per 10 carbs) but there is also a correction ratio for high blood sugar and a basal insulin ratio. Insulin pumps can also now dose insulin in .10 of a unit adding fractions to the math. Thankfully technology has advanced and can do most of the math for the diabetic. But if you want to sound really smart, the next time you see a diabetic injecting insulin (either with a pump or syringe), ask how many units they are injecting ?

Insulin is used for Type 2 diabetics when oral medications, diet and exercise still isn’t enough to keep blood sugar in range. After many years of being a Type 2 diabetic, the stress can cause their pancreas to stop producing enough insulin. But almost all Type 2 diabetics still make some of their own insulin in their pancreas and won’t die nearly as quickly without injecting it as a Type 1 diabetic will. Insulin use is one area where Type 1 and Type 2 diabetes treatment can overlap but the similarities are small and the differences are still huge.

So now that you are becoming an expert in everything insulin, you might be wondering about the recent hype over insulin prices. But since that is a whole new can of worms, you will have to come back next week to read about the controversy and my opinion about it…

Insulin 101

A comment from a friend recently reminded me how little many people understand about Type 1 diabetes. And what people know from TV/movies is usually wrong! Honestly after living this many years with Type 1, I forgot how much I didn’t know before my diagnosis! It’s all second nature to me now, I don’t usually have to think about what I’m doing. As simple as I try to make these blog posts, it’s entirely possible I am still talking over your head. Please send me questions if that happens, I can always fix a blog to make it easier to understand!

Today we are going back to insulin 101. What is insulin and how does it work? Insulin is a hormone made in the pancreas. When you eat food, particularly carbs and sugars, they are broken down by the liver and turned into glucagon. That glucagon enters the blood stream as glucose and is carried to the cells where insulin acts like a key to allow the glucose to enter the cells for energy. Without insulin, the glucose can’t enter the cells and builds up in the bloodstream. A finger prick will tell how much glucose is in the blood, 80-100 is normal (although a post-meal spike as high as 150 even in a healthy person isn’t unusual), a diabetic can have a blood glucose (aka blood sugar aka BG) as high as 800+.

When not enough carbs or sugars are eaten for the liver to produce glucagon, the body will break down fat cells and sometimes muscle cells to produce glucagon which is why low carb and keto diets are popular for loosing weight and fat. Outside of meals, the liver releases small amounts of glucagon 24/7/365 to provide energy to the cells needed for the body to function. So a healthy pancreas produces just enough insulin to match the glucagon released by the liver, too much causes low blood sugar and too little causes high blood sugar but for the non-diabetic your body keeps you perfectly in range!

Technically not correct that it “breaks it down” but still cute!

For Type 1 diabetics who’s pancreas either makes too little or no insulin, it needs to be injected to keep BG in range. For those on insulin injections/shots, two types of insulin are needed. Basal insulin slowly releases to match the constant slow release of glucagon and a fast acting insulin is needed at mealtimes with food. For those on an insulin pump, only a fast acting insulin is used as it slowly releases 24 hours a day mimicking what a basal insulin does (and what a healthy pancreas does).

Although it is called “fast acting” insulin, most take 20 minutes after injecting before working. A bolus of insulin is given at mealtime and whenever a “correction” is needed because BG is too high. Mealtime insulin is calculated based on how many carbs will be eaten (so I have to decide before the meal how much I will eat). That fast acting insulin circulates in the bloodstream on average for about 4 hours but everyone is a little different, for me it is closer to 3 hours. Most diabetics try to “pre-bolus” for meals, taking insulin 20 minutes before eating to lesson the spike from eating.

So when insulin is given either with a meal or as a correction, it takes 20 minutes to start working and more insulin can’t be given until 3-4 hours later. During that window it is called “active insulin” or “insulin on board” (IOB). Giving more insulin during that time without eating more carbs will likely cause BG to go too low. But sometimes it can take almost all of that time to bring BG back into range. Sometimes frustration from high BG that isn’t responding leads to a “rage bolus”, giving more insulin than recommend in an attempt to budge a stubborn high. Rage bolusing is NOT recommended and in certain situations can be dangerous. But we have all done it at times.

My pump screen shows my active insulin

I have my continuous glucose monitor (CGM) alerts set that I will get an alert every hour when I’m too high. I do that because I otherwise forget to check if my BG has come back into range and I want an idea of how long my insulin is taking to work. But if I have already had a bolus of insulin in the last 3 hours, there is nothing further I can do to treat the high BG until I no longer have any active insulin (which I can quickly see on the screen of my insulin pump). So sometimes I turn off an alert without doing anything because I can’t do anything more yet, it’s just on to keep me aware of where I am.

As with everything about Type 1 diabetes, each diabetic knows their own body best, how it responds, what works best, what is most successful. No one follows all the “rules” strictly but uses experience and intuition to decide how to dose insulin and when. Ask questions but also know that each diabetic you know might do things a little differently. But hopefully you have a little better knowledge now of how insulin works. And take a moment to thank God if you have a healthy functioning pancreas ❤️

The Cure

Forget the difference between Type 1 and Type 2 diabetes? Read this blog to refresh your memory!

As a type 1 diabetic it is impossible not to hope for a cure one day. There is a ton of money that is poured into research on diabetes and an ongoing search for a cure. One of the hard parts is that no one knows for sure what causes Type 1 diabetes just like most other autoimmune diseases. Some cases have been linked to genetics but I’m one of many with no known genetic predisposition. It’s impossible to stop new cases of a disease when the cause isn’t known, but if possible that would be much cheaper than a cure after getting the disease!

Most Type 1 diabetes is cause when the body’s T-cells mistake the pancreas’s beta cells as a foreign substance and attack, killing them. Without functioning beta cells, the pancreas can’t make insulin. Without insulin to unlock cells and allow sugar to enter, the cells release toxins into the bloodstream. When too much builds up, organs shut down and the body dies. This whole process is called diabetic keto acidosis (DKA). Before the discovery of insulin 100 years ago, Type 1 diabetics only lived 1-3 years after diagnosis and that was only if they essentially stopped eating. It was death by a combination of starvation and DKA. Although insulin has allowed many Type 1 diabetics to live a normal life span, it is not a cure.

The Type 1 diabetic community on social media is used to being flooded by so called “herb doctors” offering a cure to Type 1 diabetes if you buy their concoction, most that only a crazy person would try! I don’t know why they try so hard because Type 1 diabetics know such cures are a joke. There is nothing I can eat or drink that will make my beta cells start producing insulin again! But still they are relentless in their offers. I have had herb doctors comment on my social media posts which I promptly delete. There are many memes about herb doctors.

There are many other well meaning friends who will mention they heard that cinnamon cures diabetes (or a keto diet, or loosing weight or a celery diet, etc). While studies have shown that cinnamon can reduce inflammation and therefore reduce insulin resistance (which is the source ofType 2 diabetes although pretty much all humans have some insulin resistance including Type 1s), it is not a cure for either type of diabetes. There are treatments that have allowed some Type 2 diabetics to go into remission but the same isn’t true for Type 1s.

I get asked sometimes why pancreas transplants aren’t used more often to cure Type 1 diabetes. A transplant of a major organ is a major surgery and requires the patient to be on anti-rejection drugs for the rest of their life. While organ transplants are a no-brainer for people who will die without it, Type 1 diabetes usually isn’t life threatening with insulin treatment. There are pancreas transplants that happen every year for people who are dying or really sick from the complications of T1D such as those in kidney failure.

People with transplants on anti-rejection meds often have side effects like high cholesterol, high blood pressure, osteoporosis and weight gain. For an otherwise healthy person with Type 1, the risks from a pancreas transplant outweigh the risks of living on insulin. There is also a chance that the T-cells might once again attack the new beta cells and the person will once again have Type 1.

The closest to a cure in the near future is a fully functioning artificial pancreas. Insulin pumps are great at helping control blood sugar but there is a new pump in trials that has both insulin and glucagon (what is naturally released by the liver to raise blood sugar). With this pump and a continuous glucose monitor (CGM), it is programmed to keep blood sugar in range without any input needed from the wearer. Other than changing sites and refilling the pump, the Type 1 diabetic can live life normally and not have to pay attention to blood sugar and carbs. It’s not as good as a complete cure, but potentially easier than the Type 1 life currently is!

Pump with insulin and glucogon

While I would love to someday be cured of Type 1 diabetes, if that doesn’t happen in my lifetime, I will still be fine. I will keep living this life as best as I can. I will look for the blessings and otherwise keep on keeping on the best that I can.

One Year

It’s been 1 year since I started this blog. I’ll admit that I’ve had many times of doubt that I should even keep going! Traffic is still low and it often feels like no matter how hard I try, I’m still not making a difference. Almost no one is reading these blogs! But a few friends have encouraged me to keep going so I’ll do my best ❤️

In the next few weeks I’m going to try to improve the visual appeal of the website. I’ll admit, website design is NOT my strength, it never will be. I can do all the technical work just fine but website design requires a creative eye that I just don’t have. What suggestions do you have to improve the website eye appeal?

If you like reading my blog and want to see what you’ve missed, I have a new archive page where you can find every blog I’ve published! You can find the archive here. Take a moment and enjoy reading the ones you missed ?

The best way you can show your love for this blog is by sharing (every blog post has buttons at the bottom for easy sharing on social media) and sign up for email updates. Also the more you comment at the bottom of the blogs (which is secure) and share, the more my blog will get bumped up in the search engines. Visits (“hits”) help too.

To my loyal readers, thank you. Thank you for wanting to learn more about living with Type 1. You are always welcome to use the comments section to let me know what you think or ask questions (you just might inspire a new blog post ?). And if you want to ask a question privately, I’m always available at cria@thelazypancreas.com.

1+1=5?

One of the most constant things about being a Type 1 diabetic is how inconsistent blood sugar (BG) management is. Having to be my body’s pancreas gives me a whole new appreciation for how magnificent the human body is. God was very smart when He designed our bodies, something that is very evident when a part stops working properly like the pancreas.

In a person without diabetes, your pancreas, liver (which releases sugar for energy) and endocrine system work in minuscule and complicated ways to maintain a steady BG usually between 80-100. Doctors still haven’t figured out all the factors involved in keeping BG balanced. And even with how far technology has come, it’s impossible for anyone to replicate all the body functions that keep BG balanced. Being a full time pancreas is very difficult.

There is a list of known factors that affect BG (and likely more that we don’t know about). Not all food is equal, fats, protein and fiber affect how quickly or slowly carbs are digested. Trial and error is needed to try to match mealtime insulin (called a bolus) with how BG will rise or fall. But the most frustrating thing is that you can do it perfectly one time, then the next time you eat the exact same meal and bolus the exact same way you get a completely different result. 1+1 sometimes does = 5 because there are hidden factors (numbers) that I am unaware of.

Other factors that can affect BG are weather, activity level, illness, hormones, stress, emotions, change in sleep, changes in schedule, the list is long. And many times how those external factors change BG is different. Maybe last time the weather was hot, BG went up 10% but the same exact weather rises it 25% the next time. Even knowing the weather may change numbers doesn’t mean it’s possible to predict how much, it’s always a guessing game.

The hardest days are the rollercoaster days. BG goes up, extra insulin is given, it goes too low, too many carbs are eaten in response, it goes back up again, more insulin is given then it goes too low again. These rollercoaster times are exhausting as it is very stressful on the body. And sometimes getting off the rollercoaster is REALLY hard.

Extended lows or highs are also very hard on the body. An extended low (an hour +) is rough. How do you keep eating more (trying to raise it) when you are beyond full and about to make yourself sick if you keep eating? There is no choice but to keep going because it is very important to get that BG up! And often with low blood sugar the brain fog is bad and it’s hard to make good choices.

Extended highs are hard too as running high makes you feel sick (headache, lethargic, nauseous). Extended highs (4+ hours) can be difficult to pinpoint the issue. Is the insulin bad, is the site bad, is there an external factor (like stress or the weather) causing the high not to respond? These extended highs can lead to what is called a “rage bolus” which is purposely giving double or triple the insulin needed (despite all the pump alarms warning not to) because everything else hasn’t worked. All us diabetics will reach a point of frustration where we just want it to come down so we can feel better even at the risk of going too low. That is typically when the rage bolus happens. And even when BG finally comes back into range, it can take a few more hours to start to feel better.

I have always been a logical/analytical person and this unpredictable nature of BG management is probably the hardest part of being diabetic for me. I want to figure out what works and stick with it. I want to plan and prepare and know what’s going to happen. 1+1 should ALWAYS = 2 in my opinion but Type 1 diabetes just isn’t that way. It requires patience, perseverance and flexibility, areas I have grown in but can still be uncomfortable. It takes a lot of hard work whether you feel like doing it or not.

The next time you encounter a Type 1 diabetic, my blog will help you know how to empathize with that person. This is a difficult disease that takes a lot of hard work and most of us make it look easy. But you probably don’t see the tears and frustration that are a part of being a Type 1 diabetic. You don’t see the sleepless nights trying to get BG back in range so that sleep can happen (it’s harder to sleep when out of range). But we fight this disease, we fight to keep living life as normal as possible. And even on the rough days, the fight is worth it.

What We Want You to Know

As I have mentioned before, I am very active in the Type 1 diabetic community not only on social media (Facebook, Instagram) but also a part of several zoom groups of Type 1s who meet regularly. This is not only great for support but gives me the opportunity to observe what are common struggles and which are less common. Recently I asked my Type 1 groups (who were diagnosed as adults) what they wish non-Type 1s (including Type 2 diabetics as well as non-diabetics) understood about living with Type 1. Instead of me writing the blog this week, I’m going to let you hear their words.

“Carbohydrate calculation is not always straight forward. Some of our medications make us feel sick. Our medications are expensive. Stop telling me I cannot have bread, cake, candy on a special occasion. My diabetes is due to autoimmune not from eating all the candies in the world. Mood swings from blood sugar is real.”

“That I don’t decline their great looking stuff because I’m rude or anything but rather that it truly can be a matter [of] illness & having problems regaining BS control”

“How bad the [medical] support and medical guidance can be.”

“We can whatever we want essentially. All the thought, stress, planning and just general extra thought that goes into managing it. The exhaustion.”

“STOP telling me not to eat sweets. Sometimes I don’t have a choice! I don’t even like them.”

“That I’ve been waiting all week for that slice of birthday cake and I cycled 4 miles to earn it ………… and yes I can have it ……..”

“I struggle with lows and I keep some favorite candy at home. Dark chocolate, jelly beans.. people see it and freak out. ‘You wouldn’t need insulin if you wouldn’t eat that junk’”

“The difference between what I choose to have and what I can have. I CAN have anything, but I CHOOSE to eat in a way that helps my blood glucose.”

“People can’t understand that we struggle with all carbs, not just sugar.”

“People don’t understand how complicated this is.”

“Every meal & snack feels like a big decision. It’s so easy to miscalculate intake & then you end up either with a hypo or being high, both of which make you feel awful. I wish people understood that you can’t just eat as much as you like when you want as a diabetic!”

“I struggle with the widespread delusion that insulin is a cure all that allows us to eat whatever we want and dose accordingly”

“That all diabetes is the same thing, & that uniform management strategies apply to all diabetics.”

“I hate that after a High or a low I still feel crappie for a long time and they don’t understand that just because my sugar is back to normal I still don’t feel back to normal.” (another person added) “And that you may have a headache for the rest of the day & just feel exhausted.”

“Aside from the physical impact, the relentless mental and emotional energy it takes to manage it and the toll just that takes. Living in a constant state of monitoring and deprivation.“

“Everything! I wish they could live it, at least one week!”

“That they could do it too if they had no choice – the needles – etc I’m not brave for doing it – I have no choice”

“That diabetes doesn’t stop. You don’t get a day off. That I am constantly making choices to deprive myself because I know it’s better for me in the long run. That while I could theoretically eat whatever I want, if I did I would end up feeling sick later and it’s just not worth it. That when I seem picky at a restaurant, I’m not just being difficult – I’d love to eat some stuff, but I know I can’t.”

“No days off for us! Someone said to me ‘can’t you just ignore it for Christmas Day?!’ Um no unless I want to end up in DKA!’”

“I control my levels pretty well, so some of my friends think I don’t have diabetes… like seriously… or they will say it’s okay to take a bit of cake or spoon of ice-cream. I literally have to tell them every time I can’t eat that stuff and I don’t even regret or miss it. It’s frustrating.“

“The amount of stress/mental space/time/planning it takes to be fully in control of diabetes.. extra medical appointments and consideration and just not even being able to leave the house without thinking if I have snacks/when/what will I eat, and if I took my meds. And even then, not being able to achieve it perfectly.”

“That I can’t just ‘skip lunch and press on’ even if we’re behind schedule on the day.“

“That this isn’t a diet and no, i can’t just have a cheat day.”

“That it’s not the same for all type 1’s. Different insulin ratios, different reactions to food etc.”

“That sometimes I feel like crap and it’s not my fault. Rollercoasters take a huge toll on me. I’m not lazy. I’m not faking. I’m just wiped out.”

“Everything..but especially the fact that you can’t diet your way out of Type 1/that your lifestyle and food choices didnt make this happen etc. And that it is a 24/7 thing!”

I think I have touched on most of these topics in other blog posts but I thought it was eye-opening to hear the first hand accounts from two dozen different people. These are all adults who got diagnosed with Type 1 as adults. A big difference between being diagnosed as an adult versus a child is many adults don’t have the built in family support that a child has. Many of us are doing it “alone” and family and friends struggle to understand.

Don’t be afraid to ask questions, most of us welcome questions. But try not to make statements or tell us what to do, ask in a way that communicates you want to understand! And hopefully my blog prepares you for how to be a great friend/coworker/spouse to a Type 1 diabetic ❤️

Planning

One big adjustment for me as a Type 1 diabetic was having to learn to plan. It’s not that a T1D can’t ever be spontaneous, it’s just harder. I have always liked routine but I’m also one who will wake up and decide to ditch routine for the day and do something different. It’s not that I can’t still do that but I can’t be completely spontaneous, I have to stop and prepare first.

Being a Type 1 requires daily planning (which I usually try to do the night before). Before leaving the house, I have to make sure I have everything I might need (and the list is long). My biggest struggle is using something up and forgetting to replenish. It requires developing new habits which I’ve done more or less but sometimes I still forget. There is nothing like the panic of having a low and realizing I don’t have enough low snacks left, especially when pulled over on the side of the road without a store nearby. That can be downright dangerous! I try to keep back up supplies in my car too but those are even harder to remember to replenish.

Exercise is another challenge for me. Most forms of exercise cause blood sugar (BG) to drop. If I’m already on the lower side (pretty much anything under 120), I will go too low. Also having active insulin from a recent meal (for 3 hours afterward) is not a good combination with exercise as it will speed up insulin absorption and cause a low. So exercise can rarely be spontaneous and has to be planned. I’ve been in regular PT lately and I’ve learned how to time my sessions so that I don’t go too low. But it’s not foolproof!

Eating takes more planning too. Insulin has a 20 minute delay from when it’s injected (called a bolus) to when it starts working. That time is the same whether it’s given through an insulin pump or an injection. To keep BG from spiking too high, it is best to pre-bolus 20 minutes before starting to eat. That means I already have to know exactly what I’m going to eat and how many carbs it is. Most of the time I try to underestimate how hungry I am since it’s better to add a little more insulin once I’m in the meal than to get full but still have to finish what’s on my plate because that’s how much I dosed insulin (bolused) for.

Also I am not the only diabetic who has given a pre-bolus, gotten distracted doing something else and lost track of time and forgotten to start eating on time! I find that I have to set a timer on my phone so I don’t loose track of how long it’s been. And honestly there are other days when there just isn’t time to pre-bolus. Yes I know I’m going to spike but who has time to always wait 20 minutes to eat? No diabetic that I know! But if you are ever eating a meal with me and I ask for an estimate of when the food will be ready, it’s likely because of trying to time the pre-bolus. If the food is late, you will know why I’m rushing to the front of the line!

I also NEVER carried a purse before having Type 1. Keys/ID and money I carried in my pockets. In my opinion, anything else wasn’t important enough to always have with me (and honestly a purse always seemed too “girly” for my taste). But once I had to carry insulin, pump supplies, low snacks, etc a purse became required in my life. Most Type 1 guys I know have the cool sling backpacks to carry their Type 1 supplies. Fanny packs aren’t uncommon either!

Traveling is something that also takes a bunch more planning as a Type 1. Pump and CGM supplies can’t just be picked up at the corner pharmacy, most brands are only available through mail order. It’s recommended to bring 50% more than expected to use because something unexpected always happens. And everything has to be packed in a carry on (if flying), these are supplies my life depends on, I can’t risk them getting lost. And since travel/vacation often brings spontaneity not typical in every day life, I have to prepare for every possible contingency. Airlines are required to allow an extra carry on for medical supplies and believe me I need it! And most diabetics will take advantage of pre-boarding for those with medical needs because it is vitally important our supply bag is near us on the plane (and often won’t fit under the seat in front).

My emergency supplies

I have to plan for emergencies too. Whether that be natural disaster, fire, accident, sudden hospitalization, anything. I’ve learned the hard way and I now keep a months worth of supplies in a large toiletry bag which is kept in an easy place to grab. It has everything in it I could possibly need (except insulin which has to be kept refrigerated and can be bought at any pharmacy). There have been multiple occasions now when I got stuck away from home unexpectedly for days and someone was able to grab it and bring it to me. That may not happen to everyone but it happens in my life. No one else would have any clue what I would need so it’s nice to have it packed and ready for when it’s needed! If I use anything from it, I leave it out until it’s restocked. Be prepared for anything since my life depends on being prepared!

So while being a Type 1 diabetic takes more planning, it can be done. It quickly just becomes a part of life and I can’t remember anymore what it’s like to be completely spontaneous. And good BG always in range is not a realistic goal anyway and most would agree that having a spontaneous day every now and then with tight BG control off the list of goals is perfectly fine and healthy. So if you want to invite me to have a spontaneous day with you, I’m there! Just make sure I get a minute to grab my essential supplies ❤️

My Diaversary

Today is my diaversary. It has been 14 years since I began my journey as a diabetic. For the last few years I have celebrated my diaversary by drinking a real sugar Pepsi. It’s not much but something I look forward to each year.

When I was first diagnosed, I made a good effort to change my eating and exercise habits. That lasted about 3 months. I was still addicted to sugar and soda and was struggling with the foreverness of the disease. After 3 months, my willpower gave out. In that 3 months I hadn’t stabilized well either (partially due to being misdiagnosed as type 2) and it felt like all my hard work was for naught. So I went back to my old habits and essentially ignored my diabetes. I took my meds sometimes, I took insulin sometimes and I ate better sometimes. But a lot of the time, I just didn’t care.

After a few years, the effects of my out of control diabetes caught up to me. A doctor finally got my attention when he told me that if I didn’t start taking care of myself, I would be dead or on dialysis in 5 years. I found an endocrinologist who was the first to get me stable. Rather than scolding me for my lack of compliance, he sympathized with how hard it was and helped me make small changes that added up over time. He didn’t expect me to be perfect, just that I would try as hard as he was.

I still didn’t do everything perfectly (because no one is perfect) but gradually better control happened. I gave up my food/sugar addictions one by one (instead of trying to change everything at the same time). But the thought of never having a soda again was hard (and I still gave into that temptation often) so I decided I would have one once a year. Instead of giving it up for good, I could make it another day/week/month. For a while I drank that once a year soda on my birthday. Then a few years ago I learned celebrating a “diaversary” was a thing so I decided it was more fitting to move my once a year soda to that day.

Some people ask me why I would celebrate such an awful day that changed my life. I know other Type 1 diabetics who would rather do anything besides remember the day their life changed for the worse. Some, especially those diagnosed as kids, don’t even know the exact day. Although I always remembered it was early August, I was only able to find the exact day by looking back at my journals. And once I found the day, I was determined to celebrate it.

To me, I’m not celebrating that I have Type 1 diabetes, I’m celebrating that I’ve survived another year with it. I’ve made it through another year of mostly good control and minimal diabetic complications. I’m celebrating my hard work that goes into living with this disease that is relentless and never ends. I’m celebrating life.

If I was asked my secret for surviving another year with the disease, I would say that outlook is SO important. Anyone who is always focusing on the difficulties and struggles will do nothing but resent the disease. But choosing to focus on the blessings (because there always are some even in trials) brings peace and yes even joy in the midst of the hard times. What lens you choose to look through makes a big difference. It’s not that I don’t have hard frustrating times because I do, I just choose to remember that this too shall pass. As long as I continue to be faithful to do my best, it will get easier again. It’s never easy, but some times are easier than others.

So no matter how hard the disease is, no matter how much I struggle I will always choose to celebrate surviving another year. I will thank God that He granted me another year of life with a difficult disease. I will stop and remember the blessings. And I will drink a Pepsi.

Everyone is Unique

Everyone is unique, that is a concept we are all familiar with. It is no different in the Type 1 diabetes community. Although there are many things similar, each person is different too. We have different bodies, different insulin needs, different blood sugar (BG) patterns, different responses to stress, environment and food. No two Type 1 diabetics manage their diabetes exactly the same way. Many of the things I share about here in my blog are fairly universal Type 1 issues. Because I am well connected with the online Type 1 community, I have learned pretty well what is most common. But even when dealing with common issues, there are always little differences too.

Many Type 1 diabetics have trouble bolusing (getting the right insulin dose and timing) for pizza. After some practice, I really don’t have any issues with pizza anymore. I have learned how to bolus for it based on my needs and the vast majority of the time, I get it right with no issues. But rice is my nemesis! No matter how many times I have tried, I just can’t get the bolus right. I can find no consistent pattern to follow, my body responds differently each time. So most of the time I don’t eat rice or anything made mostly from rice anymore because trying to get the bolus right isn’t worth the stress for me. I haven’t yet met another Type 1 who has the struggles with rice that I have.

A huge debate in the Type 1 community is whether to eat “normal” or follow a special diet like keto or low carb. There are many Type 1 diabetics who choose to eat a normal American diet, processed foods with added sugars and carbs. There is no medical reason why that is any worse for a Type 1 diabetic than it is for any other healthy person. But there are other Type 1s who choose to eat low carb or some other diet they feel is more healthy and that is fine too. But no study has shown that one is more healthy for Type 1 diabetes than the other. I find I personally have better control when I eat low sugar so that is what I choose to do but I don’t judge another Type 1 diabetic that chooses not to.

How a Type 1 chooses to handle highs and lows is different too. I’m perfectly comfortable cruising in the 90s or even 80s while other Type 1s will eat something if they are under 100. I like to keep tight control and get alerts on my CGM if I’m over 130, other diabetics set their alert at 180 or 200 so there are fewer alerts to attend to. Some will feel low symptoms if under 100, some never feel low symptoms at all (I typically won’t feel low until I’m in the 60s or lower). All these differences affect how we manage our diabetes, how we set alerts, when we choose to take action.

Almost everyone has something commonly referred to in the diabetic community as “dawn phenomenon”. The liver typically releases extra sugar in the early morning hours to give you extra energy to get up and get moving. In those with a healthy pancreas, your body releases extra insulin to convert that sugar to energy. For those who are insulin-challenged (Type 1s), we have to adjust insulin doses to control that extra release of sugar.

80% of Type 1 diabetics get that dawn phenomenon in the early morning hours (around 4-7am). In the other 20%, there is either no dawn phenomenon or it comes at another time of day. For many years, my surge was around 2-6pm. Then it shifted from 7pm-midnight. Now over the past few weeks, it’s shifted again to 2-5am. The timing of this surge is nothing any of us can control and no one is certain why some people have the surge at a time other than the early morning hours. I have never met another Type 1 who has their timing shift like I have. And although 80% do have that surge in the early morning hours, the exact timing and how the individual chooses to dose for it can be different (and is handled differently depending on if the person uses an insulin pump or injections).

There are not only physiological differences that affect Type 1 management but different styles of management. When it comes to insulin pumps and CGMs, different brands will work better for different people. They all have pros and cons, it depends on the individual what features are most important and what cons they can live with. I have been on the most popular brand of insulin pump and it hasn’t been a good fit for my needs and body chemistry so I’m in the midst of changing to another brand. I haven’t liked this brand I’ve been on but I know other Type 1s who love it (as well as others like me who dislike it). There are others who have tried an insulin pump and still prefer injections. I may not understand why anyone would prefer multiple daily injections over a pump but that is where different styles and preferences come into play!

These differences are also why many Type 1 diabetics don’t like unsolicited advice from non-Type 1 diabetics. More often than not the advice being given is only true for Type 2 diabetes (if you haven’t learned this from my blog yet, Type 1 and Type 2 diabetes are managed and treated very differently, read more here). And what you heard worked for another Type 1 diabetic might be specific to how they manage it. Always feel free to ask a Type 1 if you can ask questions but refrain from giving advice unless you know the person and their diabetes REALLY well.

While we as Type 1 diabetics have far more in common than not, no two of us are exactly alike. Even my endocrinologist (diabetes specialist doctor) admits I know my own diabetes far better than she ever will. So you may get to know one Type 1 diabetic and then meet another who does things a little differently. That is normal! We all do our best to manage our disease as best as we can but what works for someone else may not work for me. And that is just fine. It’s just another reminder that every person is unique ❤️

The Blessings

Since the purpose of this blog is to give a glimpse into daily life with T1 diabetes, many of the topics will be the negatives or challenges of the disease although I always try to include some positives too. Yes there is a lot about T1 diabetes to complain about but there are also unexpected blessings! Although the positives will never outweigh the negatives, I always try to focus on the things to be thankful for.

Most T1 diabetics are actually healthier than their average American counterpart (this is not true of T2 diabetics, they have a much higher non-compliance rate and suffer complications at a much higher rate than T1 diabetics). We see our doctor regularly and have routine labs done multiple times a year and so we catch most health problems earlier than non-diabetics. We are disciplined eaters, the need to carb count means we portion control and keep track of what and how much we eat. Yes we are at higher risk for certain diseases and health problems but compared to the average American we are generally more in tune with our health and put effort into taking care of it. The need to always think and plan ahead for life with T1 diabetes can also spill over into other parts of our life. Many adults diagnosed with T1 diabetes as an adult have said they are more organized throughout their whole life now compared to before.

Being a T1 diabetic means we have a community we are instantly members of. Other T1 diabetics know the unique struggles of daily life and that makes us part of a brotherhood that bonds us. It is always fun to meet another T1 diabetic “in the wild”. We already have a lot in common even when just meeting. And most T1 diabetics have a “diabestie” (best diabetic friend) or diabuddies (diabetic friends). It amazes me how easy it is to have a 4 hour conversation with a Type 1 I just met.

Or wearing a CGM or insulin pump…

We also have our own jokes/memes that only T1 diabetics understand! I love how many memes there are about not changing your lancet but it’s hard to explain to a non-diabetic just why they are so funny! I’m sure I will use memes on my blog that despite me trying to explain, you just won’t find them as funny as another T1 diabetic does.

I remember when I first discovered that the light from the screen of my insulin pump provides just enough light that I can go to the bathroom during the night without turning on a light (or bumping into furniture)! It’s like I have a built in nightlight always attached to me and I love it. And unlike a cell phone, it is literally tethered to me 24/7!

I will admit that I like tech gadgets and there are times when I enjoy “playing” with my insulin pump. I’ve spent a lot of time exploring every menu and seeing what options I have. Most of the world only gets to look forward to seeing what’s on the newest iPhone, I get to look forward to what’s new in insulin/diabetes management. And when the new technology makes one part of management a little easier, I feel great joy ?. Although we may not have a cure, our management is a ton easier than even 20 years ago and I’m very thankful.

Many of us T1 diabetics have admitted to using diabetes as an excuse to bring in food where it usually isn’t permitted. Many of us have also used diabetes as a polite excuse not to eat food we don’t want! It can also be used as a reason to take a break from a work meeting or to take a sick day. Now honestly most of the time these are very valid needs but we are human and sometimes it’s only half valid.

Most T1 diabetics would also say that having diabetes makes us more thankful that our disease is usually manageable (unlike other diseases that aren’t). It makes us more empathetic to others who live with chronic diseases. It makes us more aware of the things in life we can be thankful for. Having a chronic disease makes us understand how precious life is and to be thankful for every day.

Learning to look for the positives in hard situations is not a talent that I naturally have so I work at remembering to be thankful even for the little things. It may not be my natural bent like it is with some people but I am always trying to do better. T1 diabetes, just like life in general, will always have its ups and downs and I hope that I will remember to enjoy the ride.

Diabetes Technology Part 3 – When Used Together

This is the third of a three part series, you can read part 1 here and part 2 here

My last two blogs have covered CGMs (continuous glucose monitor) and insulin pumps. This is what’s possible when the two technologies are combined!

Medtronic 670g with auto mode (closed loop)

A couple of years ago Medtronic was the first company to get FDA approval for their closed loop insulin pump. Instead of the CGM just alerting the wearer that BGs (blood glucose or blood sugar) are going out of range, the pump has the ability to use the CGM data to adjust basal insulin rates to bring BGs back into range with no input needed from the wearer. Going too high? No problem the pump will automatically start giving more insulin. Going too low? No problem, the system will decrease or suspend insulin until BG comes back up.

Medtronic may have been the first but this year Tandem t-slim launched their first closed loop system and Omnipod hopes to by the end of 2020. These closed loop systems do half the work for the diabetic, making the small adjustments when needed and only need user input when the small adjustments aren’t working. Yes counting carbs and inputting the number is still an important component of these closed loop systems but they are getting closer to doing everything else. T1 diabetics using these closed loop system see increased time in range and lower standard deviation.

Over the next few years, the closed loop systems are only going to get smarter and better. Control of pumps and reading CGM data is moving from proprietary devices to smart phones. Within the next couple of years, insulin pumps will no longer have screens or buttons, they will be controlled completely from a smartphone. Therefore pumps can be smaller and hidden better under clothing since it’s no longer necessary to have easy access to the pump.

Every new tool makes the fight a little easier

One of the most challenging aspects of being a T1 diabetic is that there is never a break. You can’t take a vacation from it, you can’t take a sick day, it’s a 24/7/365 job. But once control of a pump moves to a smartphone, it will become a little easier for a support person to give us a break. As long as that person is well trained in T1 management, they can be handed the phone and take over. Yes they will still have to be in the same room but to let a T1 sleep through the night while they attend to any alerts and only wake the T1 up if they need juice, that is priceless to the diabetic. The technology will soon be there so that we can hand off our “pancreas” to someone else for a little while.

There are many new innovations in development for T1 diabetes that are expected to come out in the next few years. Right now most CGM sensors can be worn from 7-10 days. There is a 3 month sensor but it can only be inserted in a doctor’s office by a trained medical professional and unfortunately most insurance still doesn’t cover it. They will have an updated 6 month sensor coming soon and the hope is that will bring the cost down so more insurance companies will agree to cover it. Overall CGMs are getting smaller with a longer life and smarter too. There are also multiple new cannulas in development (the connection on the skin for the insulin to go in) that will work better, have less painful insertion and are designed to last longer that the current 3 days.

One new cannula in development

In the long term, new pumps are being tested that have both insulin and glucagon (a natural hormone produced by the liver to raise BGs). The problems have been getting a stable liquid glucagon (which we finally have) and overcoming the fact that injected glucagon side effects are common (headache, nausea). But the idea is that one day, a pump can be made so that the user only has to refill it every few days and it will be a completely closed loop system with no input needed from the wearer, not even carb counting! It would be the closest thing to an artificial pancreas possible.

Insulin + Glucagon pump in trials

Even with all this technology, being a T1 diabetic still is challenging. But as technology advances it offers better control, better management, improved quality of life and lower risk of diabetic complications. It is believed that it will also truly offer the T1 diabetic a full lifespan with less effort. So while still not as great as a cure for T1, the technology future is bright.

Diabetes Technology Part 2 – Insulin Pumps

This is the second of a three part series, you can read part one here.

The last blog was all about CGM. Today is all about insulin pumps! Although in my opinion CGM is still the greatest technology created for diabetics (so far), the insulin pump is a close second.

My current insulin pump, tubing and cannula (with overtape shaped like a star)

A tubed insulin pump has 3 parts, an infusion set, an insulin reservoir/cartridge and the pump itself. The infusion set has a cannula that is inserted under the skin and attached to the tubing that carries the insulin. The insulin reservoir/cartridge is filled with insulin, connected to the tubing and snapped into the insulin pump. The pump has a motor that slowly pumps the insulin through the tubing and under the skin via the cannula.

There is one brand of insulin pump that is tubeless called an Omnipod. It looks more like a fat patch sitting on top of the skin. It is filled with insulin, attached to the skin, a cannula inserts itself under the skin from the pod and then the pod is controlled by a remote device. There are positives and negatives for each brand/type of insulin pump and each person has to decide which one will work best for them. One that is a good fit for one person may not be the best fit for another. Choice is good!

Omnipod tubeless insulin pump

Unlike insulin injections which are needed anywhere from 4-8 times a day, an infusion set (or tubeless pod) typically is attached for 3 days which means far fewer pokes/needles. An insulin pump also allows the diabetic to give a dose of insulin more discretely than with injections. Tubed insulin pumps are often mistaken for an old school pager! There is also typically a lot tighter BG (blood sugar) control possible with an insulin pump.

T1 diabetics on injections have to take two different kinds of insulin, basal for extended needs and a short acting insulin for meals and corrections. While injections can be done in half units, insulin pumps can dose in .10 units. When I was on injections, my BG had to be over 150 before I could do a correction (due to not being able to inject a smaller amount of insulin). Now if my BG is over 110, I can give a very small correction with my pump and get it under 100. I can also give a very small dose of insulin if I’m having a snack/meal of less than 10 carbs.

Insulin pumps also do a lot of the math of insulin dosing (although there is also something called a “smart pen” used with injections that will do the calculations as well). While the T1 diabetic does still have to count carbs, an insulin pump does all the rest of the math to calculate how much insulin to give. Insulin has a 3-4 hour window in which it is “active” and a pump will also keep track of how much active insulin is in your body so you can’t accidentally overdose insulin.

The pump’s ability to adjust basal rates is also amazing. With an injection of basal insulin, it releases at a steady rate over an active time of about 20 hours. The problem is that no diabetic needs the same rate of basal insulin over those 20 hours and often has to eat food or inject a correction dose to balance that steady release. With an insulin pump, a basal profile can be built to match the different rates of basal insulin needed during different times of the day, down to the half hour. There are some hours during the day when I need about 50% more basal insulin and I can match my programmed rate for those hours. Like a healthy pancreas, an insulin pump is able to release small amounts of insulin every 7 minutes 24 hours a day.

With an insulin pump, basal insulin can be adjusted as needed, for example before exercising which usually lowers blood sugar. A temporary basal rate can be set for any amount of time (in 30 minute increments) to counteract outside factors such as weather, stress, not getting enough sleep, illness, hormones and many of the other things that affect BGs. Different profiles can be saved to use the next time those outside factors are present. There is also an option for bolusing for different kinds of meals that digest at different rates. A high fat or fiber meal will raise BGs slower and the insulin dosage can be spread out to match.

Despite how advanced insulin pumps have become, there is a recent trend of T1 diabetics disconnecting their pump and going back to injections, especially using the popular “smart pen”. Many T1 diabetics get tired of wearing multiple devices attached to their body 24/7 and when choosing which one to detach, they opt to keep CGM and go back to insulin shots. That has not been my personal experience, I don’t mind having multiple devices attached, for me it’s no big deal. But I’m still relatively new to having access to diabetes technology, maybe I will eventually get burned out on all of it too. Maybe one day I will want to try taking a pump break. But for now, I am absolutely in love with my insulin pump and the ability it gives me to have even tighter control of my T1 diabetes.

In my opinion, an insulin pump always needs decorative stickers!

Diabetes Technology Part 1 – CGM

I know that if you aren’t familiar with T1 diabetes, you might think it will be hard for you to understand diabetes technology. But I think I can explain to you just how huge recent diabetes technology advancements have been and the BIG impact it is making on management! If you haven’t yet, it will be helpful for you to read the blog: https://thelazypancreas.com/2019/10/04/all-about-basal/ This will be a three part blog in my attempt to cover everything and I promise it will be interesting! While the hope is that someday there will be a cure for T1 diabetes, it does not seem like that is in the near future. But the advancements being made in management through new technology are game changers.

CGM sensor

CGM (continuous glucose monitor) is the best thing to ever happen for diabetes management. It is a small sensor inserted under the skin and it gives updated blood sugar readings every 5 minutes, 24 hours a day. The sensor is attached to a transmitter which sends the readings to an insulin pump, smartphone/watch or receiver (depending on the brand/model). More advanced brands of CGM require almost no finger pricks anymore, diabetics can go a week or longer without having to prick a finger even once! As you can see, when otherwise testing 8-14 times a day, fingers get beat up.

One of the big game changers of CGM is it’s ability to alert the user when BGs are out of range. For example, my range is set for between 80-130/150 (and different ranges can be set for different times of the day, I have 150 for after meal time but 130 the rest of the time). If I go lower or higher, I get an alert allowing me to make adjustments before I go too high or too low.

CGM is an amazing tool for parents of T1 diabetics as it allows them to monitor their child’s BG no matter where they are! While kids are in school, parents and teachers can receive alerts when the child is out of range. Parents of T1 diabetics have long lived with the fear that their child will sleep through a low BG at night, have a seizure and never wake up. Children have died in their sleep as their young bodies are less able to detect or feel the symptoms and awaken. With CGM technology, parents sleep a little easier knowing their phone will alert them if needed.

CGM also allows the diabetic to make much more precise decisions in BG management. Before CGM, if I tested my BG and saw that I was at 90, I couldn’t tell in that moment if my blood sugar is going up or down. But with CGM, if I see that over the past hour I have been going down, I will eat a small snack to stop the trend before I go too low. On the flip side in the past if I tested my BG and saw I was at 200 but already have active insulin, I may choose to keep waiting and see if the insulin will kick in. But with CGM if I see that my BG has been at 200 for 2 hours and hasn’t moved much, I’ll likely take more insulin. Seeing the trends and where my BG has been in the last few hours allows me to make much more precise management decisions than I could with just the occasional finger prick.

CGM also allows collection of data that is very helpful for both the T1 diabetic and the doctor. The A1C blood test has for years been the standard at which doctors determine if BG has been well controlled. But since the A1C is an average BG, if the diabetic is having many highs and many lows, their A1C may be “good” even when their BG management isn’t. With CGM now available, we look at time in range and standard deviation. 90% or better time in range and a low standard deviation are much better indicators of good management than just the A1C.

CGM data is so game changing that I’ve practically forgotten how to manage BG without it! A few months ago, my transmitter broke and it took 3 days to get a new one. During those days, I was often going hours without even thinking of checking my BG! I am so used to only checking when I receive an alert that without the alerts, I don’t even think about my BG most of the time. CGM has allowed me to live my life and have hours of the day when I don’t have to think about BG or being a diabetic because I have a safety net that will let me know when something needs my attention.

What is heartbreaking to me is that although everyone in the T1 diabetic community knows how invaluable CGM technology is, there are still many diabetics that don’t have access to it. It is expensive (about $1200-2000 for a 3 month supply) so those with no health insurance or high deductible insurance can’t afford it. Even some people with “good” insurance have such a high copay that they can’t afford it. Medicare is now covering CGM but not every state’s Medicaid does and many insurance plans purchased through the state exchanges (Obamacare plans) don’t have CGM coverage. In other countries, especially those with universal health care, CGM is not always covered. Last year I became aware that New Zealand still wasn’t covering CGM. Second and third world countries typically have no access at all.

You may think that insurance companies have a valid reason not to want to cover such an expensive technology. But studies have shown that ER trips go down almost 90% for diabetics on CGM and consequently hospitalizations go down too. Rates of complications is also much lower for diabetics using CGM. Tighter control and better management lead to better overall health which saves insurance companies money. CGM has proven itself to be worth more in health care savings than it costs.

Words can’t express how thankful I am for my CGM. I hope and pray that I will always be able to afford to have it. I pray for those who don’t have access and that one day that will change. The higher quality of life it offers is priceless ❤️

CGM with overtape