November is Diabetes Awareness Month.
From a Facebook post – as my diabetes is part of my kidney journey too:
Also, today (November 8, 2024) is the anniversary of my 20th year of being diabetic. I wanted to write and share about my journey. 20 years is a lot to cover, but my hope is you’ll get a glimpse into the life of a diabetic, laugh, probably not cry, gain sympathy for those you know (besides me) who are diabetic, and hopefully learn something along the way.
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Looking Back at My 20-Year Diabetic Journey
A (Fake) Dateline Exclusive
Captain Chad’s Log. Day: 7,305.
20 years ago today marks being told by my doctor that I am now a type 1 diabetic. It was news I had expected and dreaded, but hopeful it wouldn’t become my new reality. I often give friends and relatives free unsolicited advice: If anyone comes up to you on the street and offers diabetes, “just say no.”
It hasn’t been an easy road. I’d like to tell you every day got a bit better. But merely, some days are better than others. Some days I can do no wrong and my sugar levels remain steady. On other days, I think I am doing everything right, but my glucometer’s high sugar level readings display otherwise.
There are more variables than I can count that affect sugar levels; such as the type of food you eat (not just foods with or without sugar), the time of day, your activity, stress levels, and a million little things. For example: The Dawn-Phenomenon is a rise in blood sugar levels that occurs in the morning, usually between 2–8 AM. During this phase, your sugar level goes up without much explanation, but you must account for it. There is a similar phenomenon called, Foot to Floor phenomenon where your sugar level goes up once your feet hit the floor in the morning. These don’t consistently occur every morning, either.
Hereditary-wise, I was already susceptible to getting diabetes; despite being diagnosed in my mid-20s which is uncommon. It also didn’t help that at the time, I was pretty heavy having continued my (sugar-filled pop) drinking addiction I had picked up in college. The combination of genes and weight finally forced my pancreas to display a very personal, “Sorry Dude, Out of Order” sign.
Diabetes was a fantastic weight loss plan, though (note: don’t try this at home). I lost around 75lbs in less than a year – mostly due to a change in my diet and reduction in my sugar intake, and taking insulin. At the time, co-workers who hadn’t seen me in 9 months because we split into two different office buildings were introducing themselves to the new skinny-looking employee who was an eerie doppelganger to that, “other bigger Chad.”
I originally started out using pens to inject the insulin. These “pens” were pre-filled with fast-acting insulin that I’d take with meals and snacks or to make adjustments if my sugar level was high. I took another type of insulin before bed that was long-acting. Together, both became the treatment, or therapy, as it is called to help me manage my sugar levels from consistently being too high. Some diabetics still call taking insulin this way, “shooting up.”
Fun fact: There is no cure for diabetes and insulin has (thankfully) been around for more than 100 years.
In the summer of 2006, I had been consistently running high sugar levels despite efforts (at the time) to manage it better, but nothing seemed to be working. At one point I was having trouble breathing, so much so that I called 911 and waited for the ambulance out front. That is the last thing I remember before being transported to the hospital for what would be later determined was caused by diabetic ketoacidosis (DKA). DKA is a life-threatening complication of diabetes that occurs when the body doesn’t have enough insulin to use blood sugar for energy.
I spent two days in the hospital while doctors and nurses worked to get me back to a normal state. Luckily, I haven’t had to experience that again. I don’t ever want to. I don’t even want all of my mortal enemies to experience it either.
About 7 or so years ago, I finally pulled the trigger and got an insulin pump that acts more like a person’s pancreas. Essentially, a pump continues to add insulin to your body every hour, which is easier on your body than the infrequent timed ‘bursts’ of insulin I was doing. It can help you (better) maintain consistent sugar levels, in addition to dosing for meals and snacks. I had been avoiding it as the idea of a needle in me 24/7 didn’t sit well and frankly grossed me out.
The pump manufacturer created a genius pitch for those exploring the idea. A few sales reps spoke while others passed out cheese and crackers (and that wasn’t even the genius part). How they sold me was they had a panel of 6 or so active pump users talk about their experience with the device and how much it improved (read: changed) their lives. I went into the presentation skeptical, but curious. I left hopeful. There had to be something easier than using the pens and pricking my finger to test my blood-glucose level multiple times a day. It all took extra time and effort and as Kimberly “Sweet Brown” Wilkins so eloquently put it in an interview after an accidental fire in 2012, “Ain’t nobody got time for that!”
It also came with a continuous glucose monitor (CGM) which measured my sugar levels in (almost) real-time and displayed them to me on the pump so I could make adjustments as needed versus waiting to prick my finger and then adjust. So not only did I have one needle in me, I had two. The irony wasn’t lost.
Unfortunately, this particular insulin pump and I didn’t get along. Throughout the time I had it, I cursed at it often. I threatened to toss it out the window several times or smash it against the wall. But my threats didn’t scare the pump into submission. If anything, I was only making it angrier. It didn’t listen, everything fell on deaf device ears. It simply didn’t care. It just kept making ‘foul sounding’ beeps at me wanting to do this or that. Most of the time, telling me to do things I had already done. It was as impatient with me as I was with it. This negative possibility was never mentioned at the pitch, or was it? I couldn’t remember.
I was tired of feeling defeated, constantly losing a game I never wanted to play in the first place.
To top it off, it had a 4-year warranty, which is the same amount of time before my health insurance would consider letting me change. So, I was stuck with it and had to make it work for me. The upside is that my insurance covered the entire cost of the device, as they aren’t cheap. What is expensive are the ongoing supplies and the cost of insulin.
Years ago, I was able to upgrade my insulin pump and sensor combo to something my endocrinologist (a specialized doctor for diabetics) thought would work better for me. All I knew at that point was that it had to. It certainly has. I yell at it less; it beeps “profanity” back at me less and my levels have certainly been more manageable. Overall, the “toss it out the window” Defcon threat level has been lowered.
Depending on where I was working, I was able to find out who else was diabetic and bond with them over the endless challenges, and the 90-day (A1C) diabetic “average management score” wins. A non-diabetic’s A1C is between 4 and 5.6. When I was diagnosed, it was 9, when I had DKE it was 11, and my last test was 6.4 which is one of the better results a diabetic can get. I can still get better, but I could still do a lot worse than I have in the past.
When my sugar level is low (when a blood-glucose level is less than 70 mg/dL) – it is no fun, you feel like you are living in slow motion, you shake, and your body craves sugar like a deprived 5-year-old let loose in a free candy store. I have yet to be able to adequately describe (or even hear from someone else) what a low actually feels like. Sometimes when you are low, you can consume a whole all-you-can-eat-in-fifteen-minutes buffet of sugar before you’ve become an overachiever and then your level goes too high. But in that moment, anything is better than feeling low. Anything.
My go-to low reverse sugar substance is orange juice, or my self-treatment every once in a while, Mountain Dew (which seems to taste better when you rarely drink it), or good old-fashioned fruit-flavored Skittles. Even after 20 years and what seems like hundreds of times facing this unnatural feeling, I can still consume too much sugar and then I’m too high. The roller-coaster of high to low to high wears me out.
My CGM will alert my pump to alert me I’m trending low, but I can also feel a low approaching so I can tell “my waiter” I’d like the sugar buffet ASAP, essentially then raiding my fridge and pantry.
I know some people have dogs trained to sense when they are high and low, usually these are used to help kids. I had gotten a cat a few years after being diagnosed, and over the years, she would often come to sit with me (or sit on me) on the couch while I (over)consumed sugar. But once I felt normal again, she seemed to know and would get up and dart off and go about her business. Her on-call nursing shift was pretty short it seemed or maybe she was mad I never offered her Skittles.
Sometimes the insulin pump acts like it works, but while changing out the tubing and inserting a new needle, the needle can get bent or something else can go wrong. It doesn’t tell you because it doesn’t know, so then I’m higher than I should be. That’s the worst. You know you are doing everything right, but your levels aren’t coming down despite giving yourself enough insulin to overdose a small army. This appears in the dictionary next to the adjective, Frustrating.
Some fun diabetic math: If I have a sugar level of 250 (mg/dL), I should take around 3 units to get me down to around 100 (note: not everyone has this same adjustment math). A good sugar level range is 80-120. Keep that math in mind…
Early on with this new pump, I hadn’t set the dose max limit yet. So, while casually entering in what I thought was 15 carbs for my pump’s wizard to give me the proper dose (just over a unit + a small adjustment), I inadvertently gave myself 15 units. Oops. My level was just over 150 if I recall. Now do the math from above and you can go ahead and say, “Yikes” out loud. (Adding your favorite swear word is optional.)
In my defense, both areas to enter the number on the screen look the same. I didn’t initially notice until I looked again 10 minutes later and saw the display read, “Insulin on board 15 u”. Even though the insulin is, “fast-acting” it still takes a few hours to get through your system.
Unfortunately, by the time I noticed, I had taken in all 15, so it was already too late to stop it. I freaked out a bit – okay, a lot. I rushed to my fridge and pantry to grab every spec of sugar I could find. Okay, I’ll admit it, I even consumed a spoonful of raw sugar or two. Straight-up sugar wasn’t too bad, reminding me of my childhood days when I added sugar to everything. I was in panic mode as I didn’t want this mishap to cause my sugar level to go down so much that I’d go into a coma or worse.
I debated an ambulance call. I had glucagon (think: an adrenaline shot for diabetics) which is what the ambulance would have had as well, but it was an older dose I hadn’t had refilled. I called my friend to bring me all the sugar he could pack and head over. He arrived 15 minutes later; I was still standing, and he was relieved. I was in the middle of trying to overdose on sugar purposely. He drove me to the ER. At this point, I had consumed so much that I was throwing up (sorry TMI). Luckily, he had brought a bucket. We sat in the parking lot while I monitored my levels via CGM on my pump while debating going inside. After the dust had settled from the mishap, the freakout, heaps of sugar, and the ER trip, I was okay. Whew, you can sit back and relax. I’ve since set a maximum limit of 5 units.
High sugar levels, on the other hand, make you feel generally sick and pretty nauseous. It leaves a weird taste in your mouth, as if extra sugar is spreading anywhere it can go since you have too much in your system and not enough insulin to, “eat it up.” I haven’t been experiencing too many “highs” lately, but they do happen from time to time despite my (best) efforts to keep them in check. When I had my DKA, my levels had been running high consistently, so, I didn’t feel well most of the time even though I was doing my best to get them within range.
Constantly high sugar levels and high A1Cs are where diabetic complications arise. As for me, there have been some negative cause and effect of having this autoimmune disease, including neuropathy in my feet, some retina damage in my eyes, and more recently, 20 years’ worth of issues from up and down sugar levels wreaking havoc on my kidneys.
There is always talk of a cure, pancreas transplants, capping the price of insulin, and even using stem cells to reboot the pancreas. There is a lot of talk.
While I hope there will be major medical advancements in the next 20 years, if not a cure, I’m thankful for the technology currently available, which allows me to use a combination of the insulin pump and CGM to sustain me. This technology allows me to live a somewhat normal life. And for a few hours a day, I can forget I have diabetes, or as the late actor Wilford Brimley ever so infamously pronounced it, “diabeetus.”
For those of you reading this that are diabetic, I am curious if you can relate to the above. Let me know in a direct message or share your experiences in the comments.
Diabetes Awareness Month: If you don’t have it, talk to your doctor and ask them about signs to look out for and adjustments you can make to avoid ever getting it.
If you know someone who has it, offer them a hug, offer them Skittles if they need it (but not too many), and ask them how it is going. Give them the encouragement that while they may try to manage it perfectly every day, that isn’t realistic. Frankly, trying to manage it perfectly every day sets anyone up for failure, which could be the plot of the future Mission Impossible – Rogue Insulin Protocol Fallout movie.
And remember, “just say no” to diabetes if you are ever offered.
Type 1 Diabetes.
Rating: 0 Stars, would not recommend it.
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Footnote: The key difference between type 1 and type 2 diabetes is that in type 1, the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, resulting in little to no insulin production, while in type 2, the body becomes resistant to insulin, meaning it doesn’t use insulin effectively even though the pancreas may still produce some insulin; type 1 is considered an autoimmune disease and usually diagnosed in children and young adults, while type 2 is more common in adults and is often linked to lifestyle factors like weight and diet.