Drink Your Juice, Shelby!

This is going to be one of two joint posts, and they are to just get the nuts and bolts of my illnesses out of the way so I can actually blog about my life and have it make sense to a lay-reader….

This post is about type 1 diabetes.

Before I go off on the negatives, I need to lay bare the powerful positives that being T1D (which is how I will refer to Type 1, formerly Juvenile, Diabetes from now on) has brought to my life.

First, it has brought me friendships and community that (especially lately) have been lifelines in the most literal sense. T1D is a “hidden” illness. You can’t read a person and immediately know that they have it. T1D is also a solitary illness: the full weight and magnitude of managing and living with the illness is the sole responsibility of the diabetic. People can be supportive and help in emergencies, but the experience of he “D Life” is a lonely one. Knowing people who speak the same “secret” language, who know the frustrations and permanent stress that comes with taking responsibility for an organ that no longer works, who have no judgements for how difficult it is to stay healthy and how unyielding those demands are. My diabetic friends, and soon to be family, are the oasis in the wasteland.

Second, T1D trained me to approach my Bipolar as a chronic illness. I attribute much of my mental health and success with living with Bipolar Disorder to the things I learned from my first decade with diabetes. Like my insulin, I take my medication regularly, almost militantly, and I see my doctors regularly. Taking insulin is not a cure for my diabetes, it’s therapeutic maintenance. There is no cure for diabetes (yet) and there is no cure for my bipolar. I take my meds and have structured my life as therapeutic maintenance for my bipolar. Looking at both issues as chronic illnesses has given me some of my life back. For that, I am deeply grateful.

What is T1D, exactly? 
It is an autoimmune disease- which means that for whatever reason, my body’s immune system got angry and confused and attacked (read: destroyed) the insulin-producing beta cells in my pancreas, thinking those cells were unfriendly and foreign to my body. In a diabetic body, insulin is no longer produced and must be provided from an external source.

Insulin is a hormone, part of the endocrine system, that facilitates glucose regulation within the body and bloodstream. It is a critical link to how our bodies function on the most basic level. Every mammal has a pancreas and requires insulin to live. Without insulin, you die.

I have always imagined insulin as a bridge. When we eat, your stomach immediately starts to break our food down into base molecular parts- carbohydrates (CHO) being the most important one in this context. Your body converts glucose (or sugar) from the carbohydrates, so once the food begins to digest, your body gets the sugar into the bloodstream (and a few other vital organs that don’t require insulin to get glucose) and the insulin acts like a bridge for the glucose in your blood to get to the necessary systems to make them function. Insulin is the gate keeper that stands between the fuel (glucose) and the engine (your body.)

The beta cells that make the insulin also modulate glucose levels in the body, but since these beta cells in a diabetic’s pancreas have been destroyed, a T1D must also monitor their own blood sugar as well as give themselves their own insulin.

The goal is to try and achieve blood sugars that are as close as possible to a healthy functioning pancreas: 80-120 milligrams of glucose for every deciliter of blood. You can think of it in terms of tea- how many sugar cubes do you like in your tea? A healthy person likes 80-120 mg of sugar for every deciliter of their tea- juuuust right every time. Their pancreas knows what to do and does it. For me, this whole process of “serving tea” is like trying to throw an itty bitty dart through the eye of a needle, hoping to hit the bullseye of a moving target. Piece of cake!

This may sound difficult but doable, which it is, but the full breadth and magnitude of making this all possible is only fully grasped by partners, parents, the other folks who have reached a diabetics inner sanctum, and diabetics themselves, naturally. There are numerous factors that impact, sometimes catastrophically, a blood sugar. Obviously, food raises your blood sugar. Stress, both physical and emotional, will raise your blood sugar. Exercise will lower your blood sugar in both short and long terms. Alcohol, because it impacts your liver which also plays a big role in the mechanics of diabetes, can both raise and lower your bloodsugar based on a few different factors such as the kind of drink, how much, and how much food you’ve had. For myself specifically, a sizable amount of the psychiatric medications available to people with bipolar and schizophrenia will raise your blood sugars or cause you to metabolize your insulin poorly, or cause you to crave carbs and calories voraciously. It’s all kind of a bitch with many moving parts that require a lot of precision and persistence from highly fallible, imperfect humans.

The two inherent dangers of diabetes stem from both high and low sugars.

High bloodsugar poses immediate and long term, life-inhibiting and potentially threatening, dangers. In real time, high blood sugar feels awful. You are slow, cranky, typically have a terrible headache and are very tired- like someone poured syrup into the finely working parts of a clock. Then, depending on how high you are (each person’s threshold is unique, my sugar threshold is 450) you feel extremely nauseated, sensitive to hot and cold and can’t regulate your body temperature well, sweaty and pale, and you become so magnificently thirsty I really don’t think anyone else can understand unless you’ve been there yourself. This has happened to me many times in my life: my sugar is super high and I am dying for fluids but I can’t hold them down. Until my insulin does it’s job and brings the sugar down, I will drink water- sometimes just a tiny sip at a time- only to almost immediately puke it back up again… And I will repeat this drink-puke-drink-puke cycle until the water will stay down. If the high sugar is not addressed with insulin, and possibly an IV, the flood of sugar in the body will start to shut organ systems down, especially the brain, and you can wind up in a coma.

This is the part 2 of high blood sugar danger. If left untreated, sometimes it’s a few days or a week, sometimes a month or two, or 6, your body will start to eat itself alive. When this happens a T1D is in diabetic ketoacidocis, or DKA. This is where the bridge analogy is important- without the insulin to carry the fuel to the engine, you have a crisis level of sugar in your bloodstream and a starving body on the other end. The body is going to get fuel either way, so when there is no insulin-bridge to ferry glucose, your body will produce something called ketones. The ketones are an acidic byproduct of the body breaking down it’s own tissues starting with your body fat (lipids can be broken down into base parts then converted into CHO/glucose) and then will move on to muscle tissue, eventually going for your organ systems. Meanwhile the ketones (acidic, remember) build up in your blood and wreak havoc on the rest of the body. This is game over if no one intervenes. It’s a horrible and protracted way to die/be close to death. Some of the side-symptoms of high blood sugar that will occur are peeing CONSTANTLY (polyuria) which is a byproduct of that unnatural thirst (polydypsia), kidney damage (or possibly failure) from being overworked and overloaded with glucose to filter out of your urine and the ketones in your blood, damage to the nerves because the excessive sugar destroys the delicate nerve endings, and healing issues due to the high sugar content of your blood feeding the bacteria your body would normally be able to field otherwise- which causes wounds to fester and your body to rot like a moldy peach. This issue can ultimately can cause people to lose limbs like toes, feet, and legs which, when coupled with the destroyed nerve endings that would normally send pain messages to your brain, can make people have a hard time catching a minor problem that will bloom into such a mess that amputation may be required. Even if a person has never had to be hospitalized, the years and decades of those higher, yet functional, sugars can bring the things described above and more over time. It’s a slow killer.

Lovely. But we aren’t through with this pleasure cruise!

Low blood sugar is the other end. It’s a much simpler, faster-escalating crisis to have on your hands. That said, 90% of the time it’s a non-event that the individual can handle perfectly fine alone. It’s something that is commonplace and totally manageable if addressed right away, but depending on the circumstances it can escalate into a dire emergency that will put your life in very serious danger. I personally have known people who died from lack of low blood sugar intervention.

In the same way your body needs insulin to live, your body also needs glucose. It’s so crucial that some body systems don’t need insulin to access glucose. The brain, eyes, and major muscles are some of those systems that need direct access. Without a minimum level of glucose in your body, you begin to sputter out like an engine without gas. If your sugar keeps dropping or the situation isn’t handled by ingesting some kind of simple sugar that can be quickly and easily metabolized by your body, things get dire.

Once you’ve missed the window of being able to treat the low by ingestion (read: you are no longer coherent enough to eat or feed yourself…. Think Steel Magnolias) T1D folks do one of two things. They will either go unconscious or have a seizure and then go unconcious. In both cases the same thing is happening in that your brain starts to fry out without glucose to work. I am someone who siezes. In a strange way i’m almost grateful for that because, while being terrifying to watch and experience, it also expresses to others that I need help RIGHT FUCKING NOW, and it has saved my life more than once.

In these emergency situations someone has to administer a glucagon injection. It’s a huge needle that gets slammed into your butt or thigh. The glucagon is a naturally occurring hormone that signals your liver to dump all of it’s stored glucose into your body to help bring you back into consciousness. You don’t feel it at the time of the seizure, but you absolutely feel it afterwards, as if someone tried to hammer a railroad spike into your butt. Because the glucagon forces your liver to give you all it has and puts it under duress, you will come to feeling horrendously nauseated and very hungover. It’s shitty for everyone involved.

Everyone’s body is different and every diabetic has a different experience from the next. I know many people who have never needed a glucagon injection or, on the other end, never gone into DKA after their initial diagnosis. Sometimes you can have a seizure or really bad low and your body will naturally release glucagon and you can wake up on your own, eventually. We never really know if/when that will happen, and if it doesn’t and there is no intervention on the low you can die. If this is happening while you sleep, or if you are alone and no one sees the seizure, and you don’t wake up- you can die.

Most of the time a low can be felt coming on or can be predicted, and when you are aware of these cues you can act on it. It’s one of those things that while isn’t an emergency (yet) it must be acted on immediately to keep a lid on it. When you are low, you know. Your heart rate increases or you can feel it pounding in your whole body. You suddenly sweat and get the shakes. Many people get cranky or lash out from out of nowhere. You get voraciously hungry, and when someone has the “low munchies” they can put away so much food that it defies all science and biology. You become confused, can’t put thoughts together, slurry with your speech, dizzy or get vertigo. If you’re sleeping, most of the time you’ll wake yourself up from the physical stress of the low. Dealing with it is easy: you get your juice or soda or gummies and put it in your belly, test your sugar, ride it out, test again, then move on with your day or go back to sleep. Hardly a thing happens and you move on.

My seizures are the worst. Seizures in general are the worst, and if you’ve had one or seen one you’ll agree, but mine give me chills simply by thinking of them. First, I am awake and aware for the first 30 seconds (I think, time slows so much then) while the seizure is actually occurring and I know when I’m about to have one. I become drenched with sweat. Visual, but also auditory and tactile, stimulation is taxing my brain and anything that my brain has to process is taking away precious resources. My eyes begin to dart around, unable to sort what i’m seeing, while my peripheral vision begins to “dance” with the black that will soon take over my consciousness. If I can find a fixed point or limit my field of vision it helps, but I can literally feel the jerky tug on my brain. Sometimes I can fend off a seizure by limiting what i’m seeing and reciting deeply established facts of my life ( name, family members, wedding date, where I live) while I try to let my juice work. This has only happened twice in my life. Still, I am utterly consumed by fear and panic as this is all happening. I know what’s happening to me, I know I’ll be okay, but my brain kicks into primordial gear and I am in abject terror now that my survival is threatened. This fear makes me feel like I’m suddenly in touch with a part of higher functioning simian evolution. Like this feeling came before all the others that humans and our ancient relatives had. My mind becomes a Wonka-like slide show, sped up and spliced with horrific images that I didn’t know my brain had held on to. The final movement to this twisted symphony is once I start saying “OH MY GOD OH MY GOD” over an over again, with a disturbing and unnatural cadence. I know my goose is cooked at that point. All the while this is happening, my body and auto-pilot brain are in the drivers’ seat while I watch this from within myself until I “check out” suddenly and things go dark.

While I’m having the seizure my body goes rigid as I simultaneously jerk around. It’s like a full-body Charlie-horse. My jaw clenches and unclenches, and my teeth grind away, so my tongue and cheeks feel like meat passed through a grinder. You can get secondary injuries, too. I have concussed myself, bitten and broken fingers- not all belonging to myself, and given myself black eyes. Every single time I sob as soon as I check back in and am told what’s happened, and that is immediately followed by a flood of guilt and shame that go well beyond what is understandable or rational. I always feel like I did something terribly wrong. It takes me days to physically recover, and sometimes much longer to process the emotional trauma or aftermath. The last seizure I had gave me a diabetes PTSD (if you’ll allow me that); the seizure was so bad and so traumatizing that every time since then that I have had a normal, non-emergency low I fly right into panic and think that this low will kill me. This is bad because staying calm helps conserve precious resources and can get in the way of getting yourself what you need in a timely manner. Lows can happen at any time, and if you (like me) are responsible for the safety and wellbeing of others, staying calm and handling the situation is extremely important for them as well.

After all of this talk about the REALLY bad stuff, in truth diabetes is really mundane and a “humble” illness 90% of the time. It’s something that is mostly kept private, often unintentionally. The regular experience is primarily marked by a lot of thought: analysis, calculation, planning, and problem solving. The physical acts involved are testing your blood sugar, taking insulin by way of vial injection/pen injection/pump programming, and reading nutrition facts that over time you passively memorize; it all becomes less of an external or observable thing. The things you will “see” a T1D do will amount to 30 minutes at the absolute most in a given day. Many T1D people live thriving, active, rich lives where the diabetes is integrated and doesn’t inhibit their pursuits. If anyone ever made it look “easy,” there is a whole other life of discipline and work that you will not see that makes that possible. It is a hard-won victory.

In all honesty, because diabetes is chronic and is always present in a diabetic’s mind, to just get through the tedium and perpetuity of the physical, “necessary mini-abuses” of test-insulin-food day-in and day-out and the incessant silent assault on your brain, you have to do some level of disassociation to get by as time goes on. Everyone has bad days, naturally, but if you were to dwell on how much it sucks, or how lonely it feels, or how much effort it takes to feel okay, or knowing that the REALLY bad stuff can happen despite how hard we try to prevent it…. It’ll get you down. It can get you really down. To survive, you simply cannot think about these details because the reality and the enormity of it all will derail you. Your eye has to stay on the ball. You have to get through today and try to do your best to prepare for tomorrow at the same time. This is where the phrase “control it so it does not control you” is so crucial. It’s one of the biggest truths for a diabetic. In the short term you don’t want to do it (manage the illness) because it’s not something anyone would ever voluntarily want to do. It’s shitty. But the perseverance now will keep the bad stuff away, and that affords you to live the life you choose; unbound by complications and a ravaged body later in life.

This feels like a pretty complete picture of what, at the very least to me, diabetes actually is. It’s trying to live somewhere between these two awful margins and find my groove of normalcy. (Spoiler- this is my life’s theme.) It’s not clinical, and that was intentional. My biggest problem with how diabetes is approached by the greater medical institution is the emotional part of it is totally ignored. While you can’t track emotional experiences quantitatively and have empirical data to chart and dissect, humans are emotional creatures and it 100% impacts that science of diabetes and it’s management. You need to keep good control to keep complications and emergencies from happening- this is immutable fact. But, if the way to get people to do that is through fear and shame and looking at numbers as a value judgement on who this diabetic is, or a literalist reflection of the effort…… And then do this to kids, since most are diagnosed in the throes of childhood- it can be hard to be an adult later with this illness.

I have felt totally alone in my anger and desperation on the T1D. The happy and positive, sometimes “brave,” faces I see in my support networks just make me feel even more like an outlier and further keys up my resentment and frustration. I am on a journey (like right now, leaving in an hour to get my pump set up!!!) to get myself in a good place with my diabetes, so I can have a family and be the parent and spouse I want to be someday. I know I can’t be the only one who struggles this much and feels so deeply about the illness. I’m almost 30 and will have had T1D for 20 years, I have so many feelings about it!!

I hope this gives non-diabetes people and idea of what our lives are like, and that it gives a voice to diabetics who are far from model patients or who have a little rage about it like I do.

Finally, I decided to channel my stream of thoughts somewhere other than Facebook. Welcome to my first blog post.

I have such a strange dependency on Facebook. I honestly feel like I would fade away into oblivion if I didn’t have that outlet. The last two years have pulled me further and further away from my real life social circles. It wasn’t by choice, but I’d be lying if I said that there wasn’t a small amount of intent behind it. The truth is that I had to choose between going crazy or being alone. I’m getting married in September, and the entire process of planning ANY kind of celebration has made me more miserable for a longer period of time than I ever thought possible. Wedding tedium has become nothing but a searing hot trigger for anxieties I never thought existed in my broken, chemically besotted brain. Planning this modest wedding has confronted me with fears of really having no friends, or literally loosing my mind before I can sign my marriage license, all with the gentle caress of a sledgehammer to my temple.

I should share two important things, no order. One is that I have Bipolar 1 Disorder. The other is that I have Type 1 Diabetes. The bipolar makes my life hard, sometimes mercilessly hard, but I don’t feel like I struggle with it. It is something I have accepted, embraced, and control with much success. My Type 1 Diabetes, however, is something I am currently struggling with on a deep, deep level. In the last 5 months I have made a commitment to myself and my future self to take care of my body and wrestle this part of my life into submission. I want to feel as confident about being diabetic as I do about having bipolar. I’m completely disgusted by being a victim to my illnesses. I want my fucking life back.

So the two of these enormous parts of my life exacerbate each other. My diabetes triggers everything awful about my brain, and my bipolar causes me (and my brain) to react in ways that are disproportionate or simply do not make any sense in relation to what my body is doing physically. To say that I get anxious and overwhelmed with maintaining my physical and mental health is a colossal understatement. They are the twin tyrants that control my life.

This is my current context. I have never felt so miserable in body and spirit in my entire life as either a diabetic (diagnosed aged 10) or a person with bipolar (diagnosed aged 19). On top of that, planning a wedding is the worst. My single ray of light at the end of this tunnel of horrors is knowing my fiancé and I will be spouses and partners to the day we die, and we will decay together and become part of the ether, always together.

I digress…. Back to Facebook. People have been telling me a lot that I should start a blog. I’m finally doing it. But I had an epiphany. Much of my relationship with FB acts as a barometer for my bipolar. If I’m leaning manic, I post ad nauseum about politics, activist platforms, witty or smart statuses (at least to me), articles, op/eds, and anything else that gets my brain firing. I’m also aggressive and agitated, maybe passionate at it’s mildest. I have the tenacity of a pit bull and the genius of John Stewart- in my mind. When I’m leaning depressed (bipolar depression is different than unipolar depression- but that’s for another time,) I don’t post at all. I fade back and just watch my FB feed spill over with the happy faces of others, seeing plans I didn’t participate in, or resenting people for being happy and able to leave their homes, then glaring at people’s food porn and feeling like an ineffectual waste because all I can make myself for dinner is delivery or Spaghetti-Os. I hear the anger in my head at first, bitter and resentful, which then eventually gives way to just feeling hollow; unlikable, meritless, and alone even within myself. All the while, I am aware that these perspectives and temporary states of being are either fiction or so far from their kernels of truth it’s become moot- but that awareness only gets softer the louder the rest of the internal chatter gets.

This is the window inside, and the shutters are off.