Putting Off Dying, the Ultimate Procrastination
CW: depictions of depression, illness, hospitalization, medical trauma, death
"The changes we dread most may contain our salvation." - Barbara Kingslover.
It seems so silly and counter intuitive. The only thing standing in the way of your goals is yourself, yada yada yada.... What a cliche? And yet, it's so devastatingly truthful and all encompassing when it comes to human nature. Because it's not really ourselves holding us back, but fear. Fear is a powerful instinct that has kept the human species alive for thousands of years. Why is it that society views this instinct as a weakness? This ingrained, self-preservation instinct is viewed as a weakness, while courage is seen as strength. But, strength and weakness are both relative to the battle at hand. When you are outnumbered and completely surrounded, making a swift escape is the only option that will allow you to see another day. Proper strategy, good intel, and the full support of your troops can make all the difference. Fear and courage go hand in hand; you cannot be brave if you are not also afraid, a lesson I will never stop learning and one I hope I can pass along now.
In late February of 2024, the ICU at my local hospital admitted me for Diabetic Ketoacidosis (DKA), a very preventable complication from diabetes. Societal stigmas and internalized prejudice are powerful influencers. They cost me a pretty impressive hospital bill, a few years off of my family's collective lives, and could have cut mine short. Even now, over a year later, I am still discovering and exhibiting some long-term effects. Today is as good a day as any for a good old fashioned 10,000 word trauma dump. So why not?
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I started out 2024 at my heaviest, between 250lbs and 260lbs (113kg - 117kg). For context I am barely over 5ft tall (155cm). And, while I do not subscribe to the notion that weight is an indicator of health, for me this is relevant. I also had an A1C in the double digits, 10.8% to be exact. A1C’s are an indicator of how effectively your body is breaking down glucose in your blood to use as fuel over a period of approximately 90 days. A "healthy" A1C is under 6%, diabetics are considered to have their blood sugar levels "under control" when their A1C is under 7%. (if you want to get technical, its the percentage of red blood cells in your blood that have glucose attached to it.) This is the magic number that all diabetics base their lives around. I was maxed out on all the non-insulin medications meant to treat diabetes like Metformin, Trulicity, and Jardiance. But my blood sugar would still not come down; I was constantly in the 300's when blood sugar should normally be below 120. I had even started the process of getting approved for gastric by-pass surgery to help me get my blood sugar levels under control. My body, however, did not want to wait for the healthcare system to process the paper work.
I was just getting comfortable in my career at the beginning of 2024. I had finally found some kindred spirits there that I could see myself being friends with outside of work. I had a couple of solo business trips under my belt which boosted my confidence when it came to the authority my role carries. I was settled into my house my sister and I purchased the year before. All the major renovations were completed and my credit cards and car were paid off. I was content, relaxed, and as I would find out, complacent.
It was like I decided that I didn't want to worry about anything else anymore. I had spent 4 years working full time and simultaneously going to law school. I had a pretty stressful time buying my house and renovating it to fit my needs while also living in it. I felt like I was doing good to not have another mental break-down. That was my justification, which is ironic. I was using the fact that my mental health was riding the line of "good enough" to not acknowledge my deteriorating physical health.
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I was first diagnosed with Type 2 diabetes in 2012 during my second year of college. It wasn't a surprise; I knew it would happen eventually, diabetes runs in my family and I had already been "pre-diabetic" for a year or so. Pretty much as soon as I stopped playing my high school sports regularly, my A1C started to rise along with my weight. There was, and still is, a powerful stigma when it comes to Type 2 diabetes. Many people are under the impression that obesity is the only cause, and weight loss is the only "cure." I was also influenced by this spell. I saw this diagnosis as a failure, I had let myself get too fat and now I was one of those horribly obese diabetics that needed a scooter and compression socks. Logically I knew this wasn't the case, I grew up with a diabetic mother after all, one who was fully capable of keeping up with her very active daughters. Yet I still couldn't shake this view. If society tells you something your whole life, it seeps in. Yes, I knew better, but if no one else did what good was that?
Over the last 13 years I have been on every type of non-insulin medication created for diabetes, tried (and failed) every diet and meal plan, used every food and glucose tracking app, but my A1C was always still on an upward trajectory. My fingertips have so much scar tissue, they barely feel anything when pricked for testing anymore. My new goal was to not become dependent on insulin. That was my new marker for failure. Insulin has a reputation for promoting weight gain and causing low blood sugar if you are not careful. Insulin just made your life even harder. Insulin meant I couldn't take care of myself. Insulin meant I could never lose weight. Insulin meant I was disabled. It meant I was sick. It meant I had failed. Even as my A1C rose to double digits, it was okay as long as I wasn't prescribed insulin.
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And now, for a quick medical lesson.....just because...
There is some critical context here that needs to be understood. There are several types of diabetes, but most people know of just two: Type 1 and Type 2, very creative. Type 1 diabetes (T1D), also sometimes referred to as "juvenile diabetes," is when the pancreas does not produce its own insulin at all to help break down sugar in the blood to use as energy. This type is usually diagnosed pretty early in life and has very serious complications if untreated such as DKA. Most T1D's that I know have a horror story of how they were diagnosed because it usually involves a trip to the Emergency Room. Type 1 diabetics are completely reliant on insulin injections and do not benefit from other diabetes medications like Metformin or Jardiance or any GLP-1 injections like Ozempic. There hasn't been much as far as breakthroughs in treatment for T1D since the discovery of Insulin in 1921 except getting it into pill form in the past several years.
On the other hand, there's Type 2 diabetes (T2D), also known as "adult-onset diabetes." This is when the pancreas is capable of producing some insulin, just not enough or not properly. This type is usually not diagnosed until adulthood, and the progression is usually tracked through blood tests over time; it is rarely a surprise when someone is diagnosed with T2D, as they have most likely been "pre-diabetic" for some time already, meaning their A1C has been rising or on the high side for awhile. There are more options as far as medications for T2D. We see TV advertisements for them everyday; Ozempic, Jardiance, Metformin, Monjouro, Farxiga, Thiazolidinediones, Sulfureas, Gliptins, GLP-1 agonists, Bile acid sequestrants, Starch blockers, Insulin releasing (from your pancreas) pills, etc. Insulin injections, however, are usually a last resort. It is also common that one can delay or even stop the progression of T2D with certain lifestyle changes such as a low-carb/high-protein diet and more exercise, as is the case with many chronic illnesses. If you take care of yourself, the healthier you tend to be overall.
There is no single, correct way to treat T2D because it is different for everyone. When you get down to it, diabetes is a hormone disorder. Insulin is a hormone released by your pancreas. This is why diabetics see an Endocrinologist for their diabetes. Ask any woman who has gone through menopause; or just any woman really; hormones are one of the least understood aspects of the human body, and regulating them is very much trial and error. Because diabetes in general is not widely understood, the common misconception, at least here in the United States, is that a T1D diagnosis means you have an actual illness that cannot be helped and is not your fault, while a T2D diagnosis is because you are just fat and lazy and only have yourself to blame. While there are cases of T2D that have been completely reversed through diet and exercise, it really isn't that simple, especially for me.
There is another, lesser known type of diabetes called Latent Autoimmune Diabetes in Adults (LADA). LADA usually starts in adulthood and slowly gets worse over time. Like T1D, LADA happens when the pancreas stops making insulin usually as a result of an autoimmune process resulting from overall genetics and attacks cells in the pancreas. But unlike T1D, in LADA, the process happens slowly. So people who have LADA often don't need to take insulin right away. It will usually start out as a T2D misdiagnosis. At first, LADA may be managed with lifestyle changes such as exercising regularly, losing weight, making healthy diet choices, and quitting smoking. Medicine taken by mouth to lower blood sugar also may be part of a LADA treatment plan. But as the body slowly loses its ability to make insulin, most people with LADA eventually need insulin injections. Because most LADA's are initially diagnosed as T2D, we are told that losing weight and a better diet can help, which is true for awhile, until it's not.
To be fair, LADA is a bit tricky to diagnose. Most T2D's are diagnosed as soon as their A1C rises to above 7%. Again, this is almost always a gradual process as was the case with me. Unfortunately, the testing usually stops here if oral medication does what it does and your A1C starts to come down. In contrast, a T1D diagnoses involves testing your blood for C-Peptides and GAD Antibodies. Basically, these 2 markers show how much insulin you can produce on its own and if your antibodies are attacking your pancreas, respectively. A low C-Peptide level indicates that your pancreas is not functioning normally. A high GAD Antibody count means that your diabetes is a result of an autoimmune response. T1D's will test abnormally for both of these markers, T2D's will only test abnormally in the C-Peptide test. To diagnose LADA, these tests need to be repeated over time to track the progression of both, something many General Practitioners do not know to do.
When I was first diagnosed with diabetes, it was only my A1C that was tested, to my knowledge. As my A1C kept getting higher, I would still only test abnormally in the C-Peptide with my GAD's in "normal" range, but creeping up. This would have been nice to know. Currently, my GAD numbers are steady but do heavily depend on how well I take care of myself. Now, I have demonstrated enough variance in this marker to have a LADA diagnosis, finally. But I knew none of this until after February of 2024.
By the time I was in my late 20s, I was maxed out on Metformin, Jardiance, and Trulicity and keeping a completely Keto diet (zero carbs or sugar). I had even lost around 30lbs (13.6kg) or so. But my A1C was still in the high 7's and low 8's. I wasn't living a sustainable lifestyle. I certainly couldn't maintain it for the rest of my life. It's incredibly discouraging, trying to win fair and square while your opponent has rigged the game. Have you ever tried to solve a jigsaw puzzle without knowing what the end result is supposed to look like? Key pieces of information were missing in order for me to truly process my condition. I was supposed to be able to exercise and eat healthy to keep my A1C down. But, even after all of my hard work, the next step was insulin, and I just couldn't do that. I couldn't acknowledge what I saw as a failure. So denial started to creep in, and I began to give up.
Trigger warning starting now for medical trauma
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My life changed on a cold and rainy February morning in 2024, when my body overpowered my stubbornness, and I succumbed to Diabetic Ketoacidosis (DKA). DKA develops when your body doesn’t have enough Insulin to process the amount of sugar in your blood. Instead, this triggers your liver to break down fat for fuel, a process that produces an amino acid called a ketone. When done in a healthy setting, this is called ketosis, a natural state for your body to be in and burn fat. (Remember that "keto" diet I mentioned earlier?) Well, when too many ketones are produced too fast, they can build up to dangerous levels in your body. Remember, ketones are an amino acid, emphasis on the word acid. Your blood becomes too acidic, which then circulates throughout your body causing all your other organs to also become too acidic and breakdown.
This is a life-threatening complication if medical attention is not received. Symptoms come on quickly, usually within 24 hours. The onset of an individual's DKA depends on how high their blood sugar has been and for how long. My blood sugar had been consistently in the 300s for weeks. However, it is possible to go into DKA just from your blood sugar spiking up into the 500s or 600s just once. According to my bloodwork, my glucose level was still just in the mid-300s when admitted, I guess my pancreas just finally had had enough and called in my liver for back up.
The severity of DKA is measured by something called an Anion Gap. This is the difference between the positively and negatively charged electrolytes in your blood and is used to measure your blood pH level. A normal Anion Gap is less than 12. When I was admitted, mine was 29. The scale only goes up to 30. Symptoms include being very thirsty, urinating often, vomiting, stomach pain, weakness, tiredness, trouble breathing, having fruity-scented breath, and confusion. Essentially, all the crucial processes needed for your body to keep going start to malfunction.
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That Wednesday night in February, time unknown, but it was dark outside, I had had enough of feeling like all my organs were fighting each other and decided that I needed to go to the hospital. My parents were already on high alert due to a text I had sent them earlier that day. I think I intended to ask for one of them to come and sit with me because I was starting to really suffer mentally and emotionally. But apparently the confusion had started to set in and I sent them a pretty cryptic text that made no sense.
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Treatment for DKA includes an insulin drip to get your blood sugar down as well as other various fluids depending on what is needed to balance out your pH levels, or "close the [Anion] Gap." This means the lab needs to draw blood every 3-4 hours for testing so that your IV fluids can be adjusted accordingly. And, as with most hospital patients, a blood thinner was injected into my abdomen a couple of times a day to prevent blood clots. They also need to prick your finger to test your blood sugar every hour. To ensure accurate test results, the patient is not permitted to eat or drink anything until their blood pH is balanced and blood sugar is under control. So, no food, no water, getting 2 vials of blood drawn every few hours from some very dehydrated veins, getting pricked in my fingers and stomach too, an IV line on each arm and 6 sticky heart monitor patches covering my torso. Plus that little thing they put over your index finger that monitors your pulse. There was even a PureWick (pee vacuum) system on me for urinating. There are zombies from The Walking Dead that had more life in them than I did.
After the first night, I barely moved in my hospital bed. I communicated through soft grunts and moans. My head felt like it would split open any second, and my chest felt as if it had a cannon ball sitting on it. I was vaguely aware of nurses coming in and out to check on me (mostly because they would poke me every time they came in), and at least one family member was by my side at all times (during the day).
So, my first ever dose of insulin was through an IV line because that's how much I needed it. I spent so many years avoiding insulin like my life depended on it, when the opposite was true.
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messages between my sister and BFF about my condition, gallows humor is important
Show of hands, how many people refuse to seek medical treatment because they are afraid of how they will be perceived? And not just physical illness, this goes for mental illness too. It's that first conversation that we cannot push through, that first time admitting something out loud to someone else. Because that would also be admitting it to yourself. How many times has HIV been spread because someone was too in the closet to go get tested? How many times has a diabetic skipped an injection because they didn't want other people to see? How many opioid users refuse to seek counseling because they are afraid of being seen as just another addict?
Stigma is a powerful influencer.
I was too afraid of being perceived as a failure to get proper care for my diabetes. In my mind the doctor would just look at me with disappointment and disgust as would anyone else who saw me administering an insulin injection before meals. This fear overpowered my need to take care of my health, my will to take care of myself and prolong my life as much as possible. I would rather fail myself than fail others.
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I don't know what it's like to be abducted by aliens, but I imagine slowly becoming coherent while hooked up to endless devices in an ICU has to be pretty close. I remember beeping and alarms. I remember hearing conversations happening around me though not necessarily the subject matter. I remember being maneuvered into various positions and being wiped down. (Sponge baths are not as sexy as TV makes them sound.) I developed a Pavlovian Response of turning my palms upward whenever a nurse walked in so that they could get at whatever blood source they needed. I was limited as to my positions because alarms would sound if I tried to bend my arms and interfere with my IV lines. I certainly felt more like a lab experiment than a patient at times.
I only spent 3 nights in the hospital, but it felt like I had been there forever. I'm not sure if it's hospitals that make time pass differently or being sick. It's like stepping into the fairy realm where time is fluid and not bound to the same linear progression as in the human world. I went in on Wednesday, February 28th and was released on Saturday, March 2nd. No, I don't have my days mixed up, 2024 was a leap year. When it got to be Friday (I think) I was taken off the insulin IV and began insulin injections.
There are 2 types of insulin injections. There's a "mealtime" injection, or bolus insulin, that acts very quickly and short term, meaning it usually takes around 10-15 minutes to kick in. This is most likely the shot that comes to mind when you think of Diabetes and Insulin. It is meant to only be given right before or after you eat and in an amount that corresponds with how many carbohydrates you are eating. So, a bowl of spaghetti would require a larger injection than a leafy salad. The other type of injection is a long-acting 24 hour insulin, or basal insulin. This is meant to be taken once everyday at the same time in the same amount. This will keep your blood sugar levels from spiking or dipping too much throughout the day. A steady, predictable blood sugar day can make all the difference and this is the injection that helps with that.
Most T1D's take both types of insulin, and both is what I happened to be prescribed. I was taken off all my other (diabetes) medications and just put on insulin. Its the most natural medication for your body to process and the most efficient at reducing your blood sugar. This was the best way for my body to catch back up with all its functions. It was also my worst nightmare, but I had no more options.
So, 1 long-acting insulin injection everyday at 50 units plus 4-5 mealtime insulin injections depending on my eating schedule, an average of 14 units every time. That's 5-6 injections per day, everyday. Talk about going from 0 to 60 in 2.5 seconds.
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Did you know that, on average, diabetics make up to 100 more decisions in a single day than non-diabetics? This often leads to something called decision fatigue, where we exhaust our brain's capacity to make informed decisions. Ever plan a wedding? Or remodel a kitchen? Making all those tedious little design choices is exhausting right? Well that's how a lot of diabetics live on a daily basis. What should I eat for breakfast? What is my blood sugar right now? How many units of insulin will cover this bran muffin? If I skip eating now will my blood sugar drop before I can eat again? Should I pack a snack just in case? What snack? How much insulin should I have with me if I go out for dinner with my friends? Or drinks after?
I'm sure everyone knows someone who has diabetes but doesn't treat it like they should. They say they let it get really bad and now they are in a wheelchair or had to have a foot amputated. I can say that I understand this mentality completely. Having diabetes is exhausting, both mentally and physically. I could very easily sink into a space of giving up when I think about the daunting task of keeping this up for the rest of my life, knowing that my pancreas is only going to deteriorate. I mean, I've done it before....
Diabetes is an autoimmune disease that attacks your endocrine system which mainly affects your circulatory system. Letting it go untreated leads to the rapid deterioration of the smallest, weakest veins in your body. This is why diabetics are more at risk for heart problems, neuropathy, retinopathy, gum disease, circulatory issues, have trouble healing wounds or sores, and kidney and liver failure; basically all the bodily functions that rely on those tiny capillary veins. The biggest struggle for diabetics is finding the inner strength to maintain a condition that we know will be our inevitable demise.
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That Friday was eventful for other reasons. It was the first time I got up out of my hospital bed. My nurse said that I should get up and use the bathroom. (With what urine? I have no idea, I hadn't been permitted any water.) But I sat up very slowly, sat on the edge of my bed for a few minutes to rest from this exertion and my allow my equilibrium to reset, and I hobbled my way over to the toilet with my IV stand in tow. I managed to get my underwear down and sit. Out of habit, I looked down at my underwear and realized that they weren't mine, they were the weird mesh ones with a menstrual pad that more resembled a diaper I am pretty sure they give to women in the maternity ward after giving birth.
Oh, did I forget to mention that I had also been on my period this whole time? Stop and think about everything you just read, everything that I have been through so far, and add the extra nuisance of my uterine lining making its dramatic escape through my vagina. I made a mental note to ask when exactly this (I?) was changed. (I never did, I also never got my underwear back, I'm pretty sure they were incinerated.) Now, that's an odd feeling, the realization that your own clothing had been swapped out, from your own body, and you were none the wiser. The PureWick system was removed from my bed once I "successfully" used the toilet. (I don't think I actually urinated, but I sat on the seat I guess.)
That Friday evening I was also allowed to eat my first meal since my arrival. Thinking back, it was actually my first meal in about 5 days because I had worked from home all week due to a migraine (turns out it was most likely the beginnings of me getting sick). The food was better than I expected. Some type of breaded white fish, rice, a fruit bowl, a side salad, steamed veggies, unsweet tea (that I could sweeten, artificially), and sugar-free vanilla pudding. But, after not being allowed water, or even ice for almost a week, it was overwhelming. This was only the second time I had even been vertical in my hospital bed. I just stared at the meal for a few minutes, frozen at the overwhelming smell of all the food before my mom spoke up and suggested I just start with dessert, because why not? So I ate the pudding. I grew up in a household with a diabetic mother so I am accustomed to sugar-free snacks. It was fine. I also ate about a third of the fish for some protein. That's all I could handle at that point. My sister finished off the side salad for me. She had come straight to the Hospital to see me right after she finished work so she deserved it.
I was already awake and scrolling through TikToks on my phone when my family arrived that day. Being coherent with considerably more energy meant that I was very aware of just how disgusting I felt. I had used up all the wet wipes the hospital provided. I didn't even want to think about the rat's nest that was my hair and my mouth tasted like I had vomited up a whole ocean, seaweed and shellfish included. So, I asked my sister to deliver a hair tie for me. I vigorously brushed my teeth. I even put on my pants. (again, what happened to my underwear?) Lunch was delivered eventually and my mom worked on brushing out my rat's nest while I ate.
Going back to my house after this was weird. It was a Saturday so I couldn't call anywhere to make all the appointments I needed. That would have to wait until Monday. None of my coworkers would be answering their work emails for me to get back to any of their messages. Do I just resume my life like nothing happened? Should I call people and tell them that I'm alive even though they weren't even aware that I was ever in danger? So, my mom dropped me off at home. Not like in a cold way, there was just nothing left for her to do for me, and I told her she could go home and recover as well. I had just put my family through a lot, and they needed to rest and process just as much as I did. I don't really remember anything about the rest of that day except that I kind of just sat on my couch with my dog by my side, and I cried. I guess it was just the realization that I had made it through something traumatic, and the relief hit me.
After being held hostage by my own body for 4 days, a hefty ransom had been paid in exchange for my release. I had some major adjustments to make, both in the physical world and my own mental one before I was "free."
I worked from home the following week. Partially because I needed to get used to all the injections I was administering now, and partially because I kind of looked like I had been in a pretty scrappy barfight. Finding some viable veins to milk resulted in many colorful bruises all over my arms. I also didn't really want to have to explain to everyone at work exactly what had happened just yet. DKA is not a commonly known complication, people would ask follow-up questions. I managed to get a CGM prescribed and an appointment with an Endocrinologist scheduled. My family and friends made sure to keep me accountable.
Life went on and I've come to terms with the fact that I have and will have a chronic (terminal?) illness for the rest of my life. I have accepted that insulin is my friend, and I am no less deserving of a human being for needing it. And, if denial and self-sabotage were Olympic sports, I would have a couple of gold medals. When people ask me what this experience was like, the only thing I can equate it to is the 1973 film, The Exorcist, where I play Linda Blair. My blood sugar demon was exorcised for now, but there are ways for it to return if I don't remain vigilant.
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Being a diabetic is part of my identity, it's one of the first things I tell people upon meeting them. I used to hide this fact like it was a deep, dark family secret. But I've discovered that allowing for a safe environment where people feel free to ask questions leads to educational conversations, and creates awareness. Hiding your disability can be dangerous, especially if something were to happen. Diabetes has no room for pride.
As for my health, I am doing much better. My last A1C was 6%, that's a pre-diabetic level! I weigh 182lbs. I still take my 24-hour insulin everyday, but I am down to just 10 units per day. I take Mounjaro, 12.5mg every week, which does a lot better job at controlling my blood sugar than Trulicity or Ozempic did, its also one of the higher doses. I am currently working toward coming off of all my insulin. I know I will need it again someday, but if I can take care of myself for now then I may get to have a few good insulin-free years. I also still take the maximum dose of Metformin, 2,000mg every night. I always wear my CGM and even put cute stickers on it sometimes. I wear a medical alert bracelet, and I feel naked without it. It's simple, it just has my name, my mom's phone number, and states that I am diabetic and take insulin. I even have a second, "prettier" one that I wear for more formal occasions.
Most importantly, and one that I have to keep reminding myself of, I feel better. I didn't realize how tired I felt all the time, how the tiniest task would zap all my energy, how I almost always had a slight headache. I was also comparing my mental health to what it used to be and decided that I was ok, instead of looking at what it could be. I had no idea how bad I felt until I started to feel better. I have the energy to play with my dog when he's in the mood. I have to energy to do more social activities, even after a full day of work. I regularly go to the gym because I have so much energy. My mood is better, my confidence is better, I don't hurt as much. I'm like a child who tries on their first pair of glasses and can suddenly see the individual leaves on the trees when before they were just green blobs.
I still show evidence of what I went through. The CO2 levels in my blood never quite bounced back to where they should be. Hopefully this will eventually get back to normal, in the meantime I need to try to eat more veggies to bring it up. My vitamin D is always on the low side according to my blood work even though I take a multi-vitamin and additional vitamin D supplements everyday. I will most likely have to do this for the rest of my life. I still have scars on my arms where my IV lines were connected. I have dreams about being in a hospital bed sometimes, and I don't know if it's just a dream or a memory. I'd definitely say I have a slight PTSD response and start to feel really anxious whenever I feel sick to my stomach or have a really bad headache. The last time a vomited I had a panic attack right after. I'm a bit obsessive about keeping my Duolingo streak, because DKA broke my previous one. No one was upset enough about this to suit me.....
I felt well enough to log into work on Monday, to work from home. I would rather do this than just be idle with my thoughts. I noticed that all my meetings had been cancelled or rescheduled, with the memo, "so Jess can attend." I got a lot of messages, both professional and personal asking how I was. People that know me well enough asked what happened. I got several invitations to have lunch and catch-up. Almost dying really gives your social life a boost.
Even now, certain people always ask me about my health, even if I see them on a regular basis. They just want to check in I guess. I've accepted that this will always be what these certain people ask.
I love you, friend. And am immeasurably grateful for your perseverance through all you've been through so I can selfishly keep you in my life.
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