I Go Dancing

It's Halloween. This isn't my favorite time of year really, but it's still a good time. A good enough time to get out and go dancing. Swing and blues fusion dancing in specific.

The need to go out was increased by the fact that the city of Colorado Springs was basically closed down over the past few days. To say that I was going stir crazy would be to put it mildly.

There was a problem: I had no costume. I had no idea what to wear. One thing I've learned about creativity, though, is that it becomes more powerful as the date in question gets closer. Here's a chart to help visualize:

So, I'm worrying as one does when they don't have a costume for a costume party. I could go as me, but that's far too scary boring not what I want. So, in looking through my closet, I discovered that I had a Tai Chi uniform top, complete with frog buttons:

And then I remembered an absurd-ish story that a friend of mine told. She has a cousin who, in her youth, dated a guy who claimed that he was a "Tai Chi street fighter." It has been a running joke in the family ever since. If you have learned anything about me, it's that I love silly things and inside jokes. My first blog post has a picture of me wearing a corgi hat after all. And this story included both silly things and inside jokes. So I told my friend about it, and she couldn't wait to help me put on some stage makeup to make my knuckles look like they just survived a brawl.

My friend is immensely skilled

So that's how I went as a Tai Chi street fighter.

And sometimes we need to have funny things to sustain us through the years. After all, being a diabetic on Halloween is nothing if not difficult. It is a day dedicated to becoming something else, walking around the neighborhood, and asking for candy. The first of which anyone with a chronic illness will tell you feels impossible, and the other two are quite literally dangerous for a diabetic.

For the record, it was a wonderful dance and an immense change of pace from being stuck inside for a few days.

Happy Halloween everyone!

I Talk a Little About Healthcare

You may or may not be surprised to hear that I have a couple of issues with the healthcare system we have here in America. One of the biggest problems I have with it, though, is a philosophical one.

Our current healthcare system talks a little about outcomes, but its primary focus, at the end of the day, is to make a profit. Everything in America is transactional. The goal of a job or work will often define its outcomes. In other words, the success of an industry is often defined, in America, by how much money it makes. Healthcare is an industry that is inherently profitable because it is a false choice. I cannot choose to be unhealthy and still have a good life. Because of this false choice, there is also no such thing as a free market. People will pay whatever it takes to stay alive. Even if the choice is to go into debt or to maintain life, people will choose to go into debt. To not participate in health is to increase mortality. It is to die.

What does this have to do with diabetes? Good question.

For the purpose of this post, I'm going to focus on Type 1 Diabetes because that is the type that I have. There are two types (type 1 and type 2), and I can only write about that which I know. The challenges facing type 2 diabetics are similar but different.

Diabetes is a condition in which the body no longer produces a necessary enzyme called insulin.

The function of insulin is relatively simple: it unlocks cells to allow them to take in glucose (or sugar) so that they can metabolize and function. Without insulin, blood sugars rise, and raised blood sugars over a prolonged period of time cause nerve, kidney, vision, and blood vessel damage. The food we eat gets turned into glucose, so without insulin the body also begins to think that it is being starved and will break down fat and muscle in order to feed itself. Because type 1 diabetics no longer produce insulin on their own, they need to get it from somewhere. For many type 1 diabetics, their insulin delivery method is an insulin pump.

An insulin pump is a device that delivers insulin into the body through plastic tubing usually connected into the stomach or into other subcutaneous (somewhat fatty) tissue. There are only a few types of insulin that can be used in a pump. These insulins can also be used without a pump as they are the most effective therapy for type 1 diabetes (the insulin gets to work more quickly and doesn't hang around in the body for as long which makes them more predictable and useful for treating diabetes effectively). These insulins have also risen in cost despite there being 3 different manufacturers (more on this in a bit).

Yesterday, I went to pick a prescription of one of those fast acting, insulin pump compatible insulins and was told that the market price was $346.08 for a single vial. A single vial lasts about half a month for me, so the total cost without insurance would have been just over $692. This price is non-negotiable, and neither is my paying it.

Earlier, I talked about how the goal of American healthcare is to make money. My goal is to stay alive. In order to stay alive and deal with diabetes effectively, I must pay this money (or get insurance which will bring the cost down). To not pay this price is to choose to die as a diabetic. Some will say, "Why not pay less for the other insulin options?" To which I say, "There are no other effective insulin options." There are no other effective options. The choices for diabetics are limited. Specifically, they are limited to these insulins:

Each of these choices is essentially the same (there are slight differences in how they feel, but not enough to effect my choice as I have tried all three and haven't noticed any significant difference in their effectiveness). Each of these choices also costs about the same. About $346 a vial without insurance. Last year, they were about $270. When I first started taking Novolog more than 20 years ago, it was about $21 a vial. In Canada, they only cost about $34 a vial without insurance. Literally 1/10th the cost. The average cost to produce insulin is about $5 (link here). The profit margin on one vial of insulin is just above 6,900%. 

A picture of the receipt

The problem with American healthcare is that its goals are not aligned with its name. The goal of healthcare should be to keep people healthy rather than to make money off of peoples' illness, but that is exactly what America's healthcare industry's goal is: to make money. There is something very disgusting about existing in a system without choice and in which we are constantly told that it is THE BEST system in existence. Specifically, we are told that our privatized healthcare is leaps and bounds above other socialized systems.

Yesterday, though anecdotal, is one of the reasons I call BS on this claim.

When I had a private health insurance provided through work, I paid $50 for 1 month's supply of insulin. Yesterday, for the same supply, I paid 3 dollars under Colorado's Medicaid expansion program.

People are literally dying due to our healthcare system. There is article after article after article which has stories of people rationing insulin at the best and dying at the worst. These deaths are entirely preventable and entirely due to an industry whose goals are aligned with profit rather than health in addition to a political system which allows and even encourages this greed rather than fighting it.

Enough is enough. It's hard enough to be a diabetic and fighting that disease without also needing to fight a system that is designed around profit rather than health.

You may find yourself asking, "what can I do?"

Get involved. Contact your representatives. Vote in local elections. Hold politicians and those in power accountable. Spread the word. Injustices flourish in the dark, so consider this post to be a candle that I'm begging you to use to spread some light.

Thank you for reading.

I Talk About My Origin Story Part 2

It's nearly Christmas in Colorado Springs in 1996. An ambulance carries the cargo of a 10 year old who is learning to live inside a body recently diagnosed with the chronic disease diabetes type 1. Although the ambulance ride is smooth, he is crashing.

After being brought in to the hospital with a blood sugar well over 900, the hospital staff took aggressive corrective measures. His blood sugar dropped. It plummeted through 800. Took a nose dive past 600. It kept cascading down past 400. Something he would later learn is, with diabetes, everything has a time cost associated with it. High sugars cost time off his life. Even so, for sugar to crash this quickly, it could lead to a rapidly crashing lifeline: a finality of closing eyes; consciousness stolen by a coma. This reality is something by which his mother could not abide, so she pulled strings and got him a ride to a different hospital. On the way, to try to counteract the damage of rapidly dropping blood sugar, medical personal have put in a secondary IV and are pushing in a mixture of sugar and water. Diabetes is about balance. The drop caused by the first hospital must be counteracted.

In the ambulance, I distinctly remember several kind faces. Some hands holding mine. Voices saying, “It’s going to be okay” along with other medical jargon that I would later learn was like another language which translated into trying to save a life. I remember a large syringe of cloudy liquid — a syringe filled with sugar water pumped intravenously into my arm. At this point, I had an IV in each arm and the makings of a story to one day tell.

When I get to the new hospital, I am rushed into a room with many staff. I want to go to sleep. They are doing their best to keep me awake. Another IV is placed into my right arm. To keep the arm steady, a board is secured to the bottom side of it. My father enters the room, blurry either from tears or my vision wanting desperately to welcome sleep. He holds my left hand with his left and lets his right hand rest on my forehead.

I had recently told him about how proud I was to have gotten to sign the science class football because I got a touchdown in the last 15 minutes of the day games we always played. I shyly smiled and let my accomplishment splatter out in several excited sentences. My father listened and beamed back. He repeats this memory to me, hand on my hand, “Just keep thinking about the touchdown you made” as if to say, “if you can get a touchdown, you can make it through anything.” I don’t ask for the tears to be streaming down my cheeks. They act of their own accord and do anyway.

I spend the rest of the night in the ICU.

I awake the next morning having grown accustomed to the beeps and sighs that signify machines keeping tabs on life. The doctors ask how I’m doing. I don’t know how to respond. With tears as my most recent form of communication, a smile breaking through is a welcome change of pace. They ask if I’m ready to do some hard work. I say yes. I want to get out of the hospital by Christmas. I don’t want to have family gathered around a hospital bed as if it’s the centerpiece. I resolve to learn all that I can, to pass their tests, to demonstrate that I can. I do this to prove I can. My family doesn’t understand that I want to feel capable. It takes years to say this out loud.

The first thing that I’m taught are internal feelings and what they could now mean. Shaking hands are no longer only a sign of stress. They could mean low blood sugar or hypoglycemia. The doctors show me a chart.

This is the exact chart I remember seeing in 1996

They do the same for the other side of the coin: high blood sugar or hyperglycemia.

The information in this graphic is a little dated and sore muscles are not mentioned

The words low and high take on new layers of meaning.

I learn to take insulin. I'm told about a new world living inside me that I didn't care about until it was broken. My endocrine system suffered a casualty in the form of my pancreas. The doctors say that sometimes people get sick, and this sickness causes the body to attack itself. They think this may have happened to me during my illness over Thanksgiving. My body began to treat the cells within the pancreas as enemies and, as a result, my body no longer produces insulin. Insulin allows the body's cells to take in sugar. Without insulin, the body stopped metabolizing sugar and began breaking down both fat and muscle which was why my weight had dropped so significantly so quickly. I was participating in an unwitting hunger strike.

Regular human insulin for meals

Long lasting insulin used for stability

Syringes to deliver the insulin into my body since it can no longer make its own

I'm given two different vials of insulin: Humulin R and Humulin NPH. Humulin R is regular insulin that I will take 30 minutes before every meal in order to stop tons of extra sugar from flooding my veins. Humulin NPH is long acting insulin I will take twice a day to keep my sugar level throughout the day. They show me how to pinch a spot of skin on my stomach in order to inject the insulin; they show me how to roll the insulin between my hands to make sure it's mixed; they show me how to inject air into the insulin vial first so I can pull out the required dose. I am reminded again of balance.

During this time of learning and work, my family visits daily. A friend comes by with a Super Nintendo and a copy of Kirby Super Star, a game I loved. It is about a small pink blob that eats things and can gain their power. The irony is lost on me then.

I spend a few days in the hospital with the goal of getting out before Christmas comes. 

I don't remember how many days I spend in the hospital, but I remember I get out just before Christmas. I've been given a gift by my stay at the hospital. I have a new set of rules for my body, but that's not what I notice most.

I see clearly. This is no metaphor. For the next few weeks after leaving the hospital, I don't need any glasses or contacts to see clearly. It is a strange gift, but it has come in handy over the years since. It is perspective, and it is a power not often gifted. 

I see how broken this system is. I see that the medications several people need to live are locked behind pay gates. I see there is very little to no accountability placed on pharmaceutical companies who have raised their prices to unsustainable levels. I see that I am a victim of this system as well as one who benefits from it.

Seeing clearly is my super power. And I will use it to lobby for change.

If I don't, then all of these stories, all of this pain won't mean anything.

I Talk About My Origin Story Part 1

The year is 1996. I'm feeling sick after a wonderful Thanksgiving dinner in my grandparents' small home in a small town in Kansas. I don't know it yet, but this is the beginning of a new life.

A few weeks pass. I enjoy the waning weeks between Thanksgiving break and Christmas in school but can't help but notice how something just doesn't feel right. I am thirsty all the time and can't stop going to the bathroom. I feel tired and sore and, as the days pass, increasingly worried.

I had a fascination with scales and my weight around this time. It may have been because I was an adolescent man and thought my worth was measured in my weight. Regardless, it was this fascination that allowed me to answer my mother's question one weekend: "Have you lost any weight?" To her astonishment and my dismay, I had lost ten pounds in seven days.

My mom is a trained nurse. She consults with my stepdad, a doctor, and later that night they run some store bought tests. The first test is done with a large, clunky machine, a sharp metal poke applied to a shaking finger tip, and my first drop of blood put to a test strip designed to measure blood sugar. The test takes 45 seconds and comes back as error. Value unknown. The second test requires me to urinate into a plastic tub and dip a strip into it. The strip is designed to measure ketones in the urine. Ketones are an acid which result from the body breaking down fat to use as energy because it doesn't have enough insulin to use sugar. The strip turns a dark purple indicating that my ketones are elevated. I still do not know what this means yet.

My mom furrows her brow and breathes deeply as if steadying herself. I ask her if everything is okay. She says yes. I ask her if things are going to change. She breathes deeply again and responds, "If it's what I think it is, yes." I'm still thankful for her honesty.

We pile into an SUV and set course for one of the hospitals in Colorado Springs. The sun has long since dipped behind the mountains. The waiting room is bright enough to rival the day. Beeps, sighs, and coughs create cacophony and intermix with alcohol sterile smells that all hospitals share. I'm checked in and brought to a room where a nurse enters with a wheel chair and says, "I'm here to push you around." His smile invites me to do the same, so I do. Mom does not. She stands with arms crossed and waits for them to finish their tests.

The tests are finished. The results aren't shared with me until several years later. My blood sugar, at time of intake, was 964 mg/dl. The normal range is 70 to 120 mg/dl.

This result causes a flurry of activity. The staff puts an IV into my left arm first. They do this to get my body fluids. At some point, they give me a massive dose of insulin because my blood sugar is so high as to be scary.

Unfortunately, they miscalculate. Or they overshoot. I'm still not sure which. This action causes my sugar to plummet, and allows me to learn the first major lesson about diabetes: it's supposed to be about balance. However, with my sugar dropping so quickly, mom makes the decision to have me moved from this hospital. I'm loaded into an ambulance. People are all around me. Things feel different. Everything is more distant.

I learn later on that the balance of diabetes has dire consequences. I am given, on my first night of being a diabetic, an object lesson on what it feels like to crash.



Thanks for taking a moment to read through this and be on this journey with me. In part two, I finish telling my origin story.

I do things

Hello, my name is Andrew.

It's a Corgi hat.

Sometimes, I go by Drew.

I do things like Poetry:

Asked to do a poetry gig 

Doing a duet with a friend

Even got to perform on a TED stage

I do things like martial arts.

At a Cherry Blossom festival in Denver, CO.

This is a video of a drunken form I choreographed.

I do things like gymnastics.

Backflip with a split kick.

I do things like hiking.

At the Pikes Peak summit in Colorado Springs, CO.

I do things like dance.

Swing and blues at a friend's wedding.

I do a lot of different things. I always carry something with me when I do things, though. 

I carry Type 1 Diabetes. I was diagnosed with the disease 23 years ago. In that time, I've done a lot.

I wanted to start this blog due to a few recent experiences. One of which was at a social swing dance. A person with whom I happened to start a conversation looked at me wide eyed when I told them I was diagnosed with diabetes at the age of 10. 

This blog is, in some ways, my answer to that expression. I've seen it plenty of times before. It doesn't bother me anymore. But it does make me wonder how much most people truly know about diabetes. 

I am starting this blog because I wanted to be able to answer some questions about what diabetes is; how people deal with it; some common misconceptions about the disease; how our healthcare system and society negatively impacts care; and to share some of my work around this topic. 

Please join me as I explore my experience and thoughts in and around diabetes, healthcare, society, and random adventures.

If you have any questions, please email me at: ADiabeticDoesThings@gmail.com

Thank you for your time!

Signing off for now,

Drew.