Wins and Losses in the Battles of Diabetes
As a diabetic, you take your wins but you also take your losses. And as far as I’m concerned, there’s more losses than there are wins. It’s just not easy, ever. One of the losses I took hit me about four or so months after I was diagnosed with diabetes. Being in the fifth grade we got to go for an hour or so of PE every week. Prior to diabetes, I was a kid that could do the required push ups, sit ups, pull ups and run a mile. I was running eleven minute miles before I got diabetes. Doing the usual PE activities would send my blood sugar spiraling downward and me to the nurses office where I would then spend a couple hours in there trying to nurse that low blood sugar back into a normal range. Those little worthless juices that the school gives to us for lunches or that are stored in the nurses office for the diabetics with low blood sugars. Juice and graham crackers. It started to be an inconvenience, my low blood sugars, I was missing class, I couldn’t think straight when I was having them, it just wasn’t a good thing. And thus, I got told that I couldn’t participate in PE, not in the running activities, not anything that was considered good cardio activity. No, I could only participate in the semi-annual, we’re going to give you a test and you can sit there and do your sit-ups, you could go do your pull ups, and you could do your push-ups, but you can’t run. It was so sad. Since I couldn’t do my 4 laps around the grass field, I couldn’t get my certificate saying that I had passed the test. I was sad. It was detrimental to a kid who had always loved PE, who had always loved being active, who was always outside on her bike, rollerblading, swimming, and running around.
I was all of the sudden limited in the activities that I could participate in. I hated it. This would cause fights for many years to come. When I got diabetes I was only checking my blood four times a day, breakfast, lunch, dinner, and bedtime. There was no, you can go participate in sports if you check your blood before doing so, there was no mention of snacks before participating in said activities. I don’t remember what was going on. I do remember that while every other student was whining because they had to take PE and they didn’t want to, I was crying because I couldn’t take PE and I did want to.
During the years I spent in middle school and high school i escaped the dreaded by all others PE classes and to my dismay I didn’t get the opportunity to participate in sports. I was a fish that would’ve loved to have been on the swim team. I had begged over and over and over again to be able to play baseball. It just never happened, none of it…
I had to wait until I was 21 when I got an insulin pump before I could start participating in those activities that “normal” kids participated in. I was ecstatic when I got my pump, but among the usual reasons (read: no more shots) I was most excited because I would finally get to participate in “sports” because I had a plastic pancreas. That plastic pancreas was going to help me out because I wasn’t taking huge amounts of insulin all at one time, I’d be getting little bits every hour and since I had to check my blood more often to be on the pump I knew what my blood sugars were going to be going into whatever athletic class I chose. I could disconnect the pump while participating in said sports. It was gonna be great, it was great. I got to take a running class, which I sucked in because I couldn’t remember how to breathe while running and I had to relearn and haven’t really been any good at running ever since. It’s rough. But I also go to take a racquet ball class which I absolutely loved and we actually spent more time putting welts on each other than actually playing racquet ball properly. I even got to participate in a couple semesters of weight lifting class, and I had more fun doing cardio activities than I did lifting weights. But in all these classes, I rarely had a low blood sugar and it was a cool feeling. I was almost a normal kid, I mean, if you ignore the fact that before class I was checking my blood, drinking juice if I needed to, disconnecting my pump. I was doing the things I didn’t get to do and was told I couldn’t do when I was in middle school and high school. It was cool.
Now we fast forward to present day (because a whole lot of stuff happened between ages 21 and 26 and not much of it was healthy) where I’m learning how to adjust to my new insulin pump and handling my diabetes while working out and cycling. With the recent care of my diabetes (recent being the last year and a half), I’ve encountered several wins and several losses. A win was me being able to skydive. Something I had always wanted to do but also something I was always told that diabetics couldn’t do. A loss was on my 4th jump (a made a total of 5) my blood sugar going low while I was 10,000 feet in the air and having my instructors telling me that on the way down I was mildly unresponsive to their hand signals. It scared the living daylights out of me. If I were to go low and pass out while in the air, I’d be as good as dead. I made one more jump that day and have been unable to make another jump. On the various levels of stupidity, skydiving is stupid, sky diving with the possibility of going low midair is just beyond stupidity, skydiving with the possibility of going low midair after taking care on the ground to make sure that you weren’t going to go low is a death wish. My skydiving dream has been retired. But even though I had to put another tick on the board for a loss in the end, I got a win, 5 jumps were far better than no jumps. Skydiving was going to be my sport, but realizing my fear of what would happen if I jumped again, I retired and picked up another sport. One that wasn’t exactly available in middle school or high school.
My biggest win in my 15 years of having diabetes was me in March of this year, deciding that I was going to start riding in Tour de Cure’s across the US. It served a dual purpose, 1) I got to participate in a sport, and 2) it’s going to help find me a cure. I may not have ever been able to play baseball or go running in PE, but I can cycle, and I enjoy it. Cycling has become my sport. It took far more work in the beginning of me deciding to cycle to control my diabetes because I was still on shots, but once I got on the plastic pancreas again, things started to take shape for the good. I figured out how to ride while wearing the pump, I figured out what I had to eat in order to keep my numbers under control while riding, I figured out how often I had to stop and how far and how hard I could ride and yet still keep myself in good working order.
After so many losses, I’ve encountered a win that I can keep, nothing but my stupidity could turn it around into a loss. I have finally found something that if I actually take the time to take care of my diabetes, I can go and enjoy it. I have finally found a sport that I can “compete” in and that actually has some stability so that I can predict what will happen while I’m participating.
Things have changed in the last 15 years. 15 years ago, it was harder to manage diabetes and participate in various activities. But a lot has changed. And while we are winning more battles, we still have yet to win the war that the lack of a working pancreas is waging within us. But now, I can help win the war. I can use my newly found ability and my current win in diabetes to help find a cure. I’m refusing to be limited any longer, anything else that occurs in my life where diabetes is concerned, I want it to be a won battle. And actually, in reality, a won war would be far better. Kids like me shouldn’t have to wage the battles that we do day in and day out with this disease. We shouldn’t have to pray for a win where the things we want to do are concerned and worse yet we shouldn’t have to be devastated by a loss when we find out that we can’t do the things that we wanted to do.
I’ve had some wins, and I’ve had many losses. And while the wins are exciting, the losses are far beyond devastating sometimes, especially, when I remember the parts of my life that I can remember before I had diabetes. If I hadn’t gotten diabetes, I would’ve been able to play baseball, I would’ve been able to gladly participate in PE, I’d probably still be skydiving. And I know I can’t dwell on the past and that I should only focus on the present, but my present could’ve been different, drastically different, if the war in my body hadn’t been lost. I want to win the current war. I want my diabetes to be gone. And it will be gone, one day, I have to believe in that and thus, I’m taking my most recently won battle, my battle to be athletic, and I’m riding to win the battle against diabetes. I will win.
This is excerpt from my NaNoWriMo project: Confessions of a Type 1 Diabetic. For the curious, it’s 1777 words bringing my NaNoWriMo total to 5515 words.
A Previously Unwritten Letter – Dear Dead Worthless Pancreas
It was shortly after my life almost ended that I was forced to make a choice “go see a counselor or go to a journaling group”. I was completely against the counselor thing. I had been going to one before I landed myself in the hospital on the verge of death with DKA so bad that the doctors didn’t know if they were going to be able to save me and after that event, the counselor thought I was suicidal, a lot of people thought I was suicidal but I wasn’t going to be treated for suicidal behavior because I wasn’t suicidal, I just didn’t want to have diabetes anymore and I didn’t think that there was anything wrong with that. What I thought was that just wanted to be free of this disease that I had been stuck with for twelve years and that I’d probably be stuck with for a long time to come. I didn’t want to die, but that’s what everyone thought.
I was lying in the ER that my mom and dad had taken me to after I called them and said I needed to go where the doctors told my mom “Mrs. Steele, we’re not sure if we’re going to be able to bring her out of this” did I think I was suicidal. They didn’t know what “this” was at that time. They didn’t know what I had done to myself. They didn’t know that I had gone a year without checking my blood, or if I did check my blood it was on some strange whim. They didn’t know that I had gone a year without much insulin. They didn’t know that I had had a pump that I had been wearing and during that time, I was only getting whatever it was giving me each hour thanks to the basal rate but that I hadn’t been bolusing. They didn’t know that I had gotten fed up with my diabetes and my pump and that I decided I wasn’t going to have diabetes anymore. They didn’t know that checking my blood and taking insulin wasn’t a priority on my list.
What they knew was that there was a 23 year old lying on the bed in the ER unable to breathe because she was hyperventilating. What they knew was that she was fighting them when they told her to calm down and breathe because “it hurt”. What they knew was that there was a girl lying on their bed in the ER that had been throwing up her guts all day telling her mom that it was because of a bad tuna fish sandwich. What they knew was that there was a girl lying in the ER who was so dehydrated that she could barely talk because her mouth might have well been full of cotton. They knew that whatever it was that I had done to myself, they couldn’t fix it there in that hospital, and so they drugged me and put me in an ambulance and drove me downtown.
I don’t remember the ambulance ride, except for a vague memory of the sirens going and the young man paramedic telling me “Courtney breathe, you need to breathe” and me crying “I can’t breathe. It hurts”.
They took me downtown to a hospital that happened to contain all the endocrinologists that I had taken care of me as I was growing up. How they figured out how to fix me I don’t know. I had a morphine drip connected to my IV and boy was I loopy. I remember my first night in the hospital, fighting with a nurse because I had managed to roll over in my bed in ICU and gotten tangled in my lines and set off alarms. I remember being so loopy the next day and mom just looking at me, still not knowing what I had done to myself, and me telling her. Of course, I only told her about how much I hated diabetes and how I wanted it to go away, and how I had not taken care of it. I think I left out the part where during that year and for the 2 years prior to that, I had been drinking regularly. If I was buzzed beyond recognition, diabetes didn’t exist and in those times I was free from my disease and I was having fun and I enjoyed myself. She only got half the story and she wasn’t happy with what she heard.
It took them (the doctors) four days to get me out of diabetic keto acidosis, pumping insulin into me through an IV, pumping fluids though the same IV and pumping morphine into me to get me to relax enough that I could breathe and so that they could reason with me. Following those 4 days in the hospital, I spent a week out of school, a week off work, a week with family members trying to reason with me and figure out why I had done what I did to myself. Grandma came and told me that I needed to journal. It was shortly after that conversation that mom threw the line at me “go see a counselor or go to a journaling group, that’s your choice, you have to do one or the other”. I hated her for it. I yelled at her for even suggesting that I go back to a counselor that had thought I was suicidal. I decided on going to a journaling group.
The funny thing about journaling group is that I rarely journaled about my diabetes. I journaled about all those that I hated and how people pissed me off. But my diabetes, I didn’t want to write about it, I didn’t want to confront it. I didn’t want to confront the culprit that had taken my life from me. But one thing that was often suggested as a writing technique sticks out in my head, the unsent letter. Now, I usually wrote these to people that I hated vehemently and shoved them in pocket in my journal and it was amazing how much pain was lifted when I wrote those letters and got so much that I had wanted to say and never did off my chest. What I never thought about was writing to something that had hurt me more than anyone else. The “something” that had caused me to hate so many people and to resent others. That something, my pancreas. I don’t know what it did, decided to go on vacation, got unemployed or what, but it stopped working and killed a part of me with it and that angers me. Most of my anger issues stem from my diabetes and my diabetes is no ones fault other than my pancreas’ so here we go…I always write the address on the envelope of my letters before I write them as though if I write them before addressing the envelope, it won’t get sent and we want to send this one…
Courtney’s Dead Pancreas
4 or so inches long
Just Beyond The Stomach, CB 01992
CB being Courtney’s body and 01992 being the year I was diagnosed.
Dear Dead Worthless Pancreas,
How are you these days, jobless, just hanging out, doing what? What happened, did you decide to go be a bum on the beach, are you enjoying the waves? Did you decide that you needed one day off of work and then decide that life was great not working so you weren’t ever going back. What the hell happened to you. Did you decided to go be a drunk bum in a bar incapable of taking care of yourself and living off whatever people would give you? You failed you know, I don’t think you are alive, your problem right now, you didn’t get buried, you’re not even rotting. If I had to say that you were somewhere, I’d put you in limbo, you’re chilling waiting for something to happen. I can tell you what hasn’t happened, a cure hasn’t been found for me and when a cure is found for me I pray to the dear Lord that it doesn’t have to do with you. You were unreliable the first time around and you know what, in matters of life and death, you’re not worth giving a second chance.
Do you realize that you had it good when you were working? Do you realize that both you and I could go to the beach and enjoy the surf of the sea on the water, now, you’re bumming and guess what, I’m not enjoying it, and so I hope you are.
Some days, I know you feel like coming back to work, and so you might produce just a little insulin, I don’t even know why you try, it causes me more trouble than it’s worth that you decided to get out of bed that day. You should just stay in bed, don’t show your face around here ever again, it’s not worth your time and it’s definitely not worth my time.
You know what amazes me, you’re not even as cool as the other organs, or maybe it’s that you just not nearly as important. Other organs decide to die and they get replaced. If a kidney decides to fail, guess what, I could get a new one (or at least I could before I got diabetes, thank you very much for that one). If my liver was dying (at it wasn’t because I had become a drunk to drowned out the pain of my not working pancreas. i.e. you) I could get a new one of those too. My heart, should something horrific happen to it, it might take a while, but he could be replaced as well.
But you…can you be replaced, no, you just fail to do your duty and force your carrier to get a pancreas in a bottle and inject ourselves with it. No, you’re not nearly as nice as the other organs. You’re self centered all you thought about when you quit your job was you and how cool it would be to just lie there behind the stomach that protects you from the angry people ripping you out of your nice warm bed where you lie and read and watch TV.
You’re unimpressive and uncool and maybe that’s why you quit, so you could go crawl into a corner and curl up into a fetal position and stay there until a cure could be found and not only would you have to do your job but your carrier (ME!) wouldn’t have to do her job either. You do realize that diabetes is a full time job for those of us that previously had a working pancreas (YOU) and that our job isn’t nearly as easy as your job was, and you do realize that you had it easy right, because I was a healthy kid that didn’t eat a lot of sweets. Yeah, you had an easier job than an of your surround co-workers.
I hope you’re happy with whatever it is you’re doing these days, because me, I’m miserable. Thanks for that.
Hatefully Yours,
Courtney
This is excerpt from my NaNoWriMo project: Confessions of a Type 1 Diabetic. For the curious, it’s 1866 words bringing my NaNoWriMo total to 3738 words.
The Candy Smuggler
Smuggling, what a word, one that usually has illegal connotations associated with it. There are several things that I think of when I hear the word smuggling. The geek in me thinks of the Millennium Falcon, Han Solo’s famous smuggling starship, and how he had to conceal Chewbacca, Luke, Obi-Wan Kenobi and himself, in his smuggling compartments as they were being captured by the Death Star. The recently graduated college student in me thinks of the all too common conversations that occur shortly after spring break among the students that went out of the US to places such as the Caribbean. Students trying to smuggle Cuban cigars into the US, attempting to get past customs in the stateside airports with their illegal contraband, the cigar shops they stopped at, the illegal in the US perfect tasting Cuban cigars they bought. It’s been heard time after time, the ones that make it through customs and the ones that get caught. The diabetic in me thinks of my own smuggling story.
My smuggling story is slightly different from Han Solo’s and the college students returning from vacation. It isn’t exactly a cliff hanging, are they going to make it out of the Death Star alive or did they make it past customs with the cigars story. It isn’t a story of “what’d they do when they caught you, did you get detained, did they confiscate them, did they threaten you with a visit to jail, and did they tell you that they would be watching you on your future trips out of the country…” No, my story is far less detrimental on the federal level and yet maybe more detrimental on the personal level.
Every Halloween after I got diabetes I hated the fact that there’d be bowls of candy just sitting around. Be them in kitchens of friends, on the teacher’s desk, or by my front door. One would think this odd given my history of not having a bunch of candy every Halloween prior to diabetes. Sure, maybe a piece or two for a few days following Halloween but never did we go trick or treating and come home with pillowcases full of sugary goodness. And the one time I do remember trick or treating, the people on our street were healthy distributors and we got apples and pencils and a couple pieces of candy. Nothing huge, the candy didn’t last us for months; we weren’t kids that at Christmas time we were still munching on Halloween candy. No, that wasn’t us, so the fact that the candy bowls taunted me was new, because I don’t ever remember them taunting me before. Of course, I’d been allowed the occasional piece of candy previously. The story completely changed when I got diabetes and I was taunted by the “unobtainable” Halloween candy. I was in a situation where “I couldn’t have it and so I had to have it scenario” and you know what, I got it.
It didn’t matter where the bowl was, it was as though the bowls contained the Sirens that were singing to Odysseus in the Odyssey as he made is way past the isle of the Sirens. The candy bowls were singing to me, tempting me, urging me to steer myself into the extreme rockiness of high blood sugars and all that accompanies them; at the worse point, that rockiness would’ve been the same rockiness that Odysseus would have sailed into had he not been strapped to the ship rail making it impossible for him to give into the temptation of the Sirens, death. I however, somehow managed to not be strapped to my ship, and I would sneakily creep past whatever obstacles were in my path and I’d smuggle candy.
I can remember one year in particular. I must’ve been fairly young still, in the 11 year old range, it could’ve very possibly have been the same year I got diabetes as I was still wearing footy pajamas. I can distinctly remember my parents handing out candy from a bowl they had waiting by the front door. But they also had a surplus of candy in the kitchen, the remainder of the bag that wouldn’t fit in the bowls, it was there on the counter. And so occasionally, I’d grab hold of the legs on my jammies, hold them up that way the feet weren’t dragging as I really didn’t want them to hear me on the kitchen floor, the plastic bottoms of my feet hitting the ground. I’d as quietly as I could I’d go down the hall, praying that my sisters wouldn’t catch me (because they were the type of sisters that would have nothing to do with the trouble I was going to get myself into, they never were supportive sisters in that fashion, they were no cohorts of mine), and I’d come to the end of the hall, and peek, very carefully of course, around the corner to get the location of my parents, after assuring that I was safe, I’d turn into the kitchen, pick up a few pieces of candy, drop them down my jammies to my feet, and quietly recede back into the safety of my bedroom. Once in my room, I’d crawl up onto my bed, unzip my jammies and unload my feet. I’d tuck the candy away into my headboard, I’d put some into my backpack, and I’d eat some.
On this particular year, I didn’t get caught, which is good because I would’ve been in some serious trouble with my parents, of course, it could’ve possibly prevented the recourse of eating the candy. I don’t remember what happened, but if I had to guess (because at this time in my diabetic life I wasn’t smart enough to take insulin in secret for the things I was eating) my blood sugars probably went high, and I probably lied about them to my parents about how I didn’t know how they had gotten so high and that “no, I hadn’t eaten any candy.”
This is really the one smuggling instance that sticks out in my head as my first act of smuggling. It was the first of what would become an ongoing smuggling spree. And it wouldn’t just be kept to a yearly Halloween incident. It would spread. I would become tired of being limited in what I could eat, I would become tired of people asking if it was ok if I ate [insert some questionable food here] and I would thieve and smuggle sweets whenever the chance was presented to me.
Yes, this was just the beginning of my acts as diabetic crime lord. My growth as a crime lord was aided and abetted (unknowingly) by those that cared. The people that wanted to keep me safe from “unhealthy foods”. The Sirens of those “unhealthy foods” still call out to me. Sometimes I can resist the sweet desserts, other times though I cave. When I can resist the sweets, I get praised. When there’s this look of deep longing for the sweets in my eyes or I ask a question about them, I get blocked, a tall thick brick wall goes up in front of me as they (the caring party) tries to protect me. What they don’t understand is that their protection is more detrimental to me than if they had let me have a piece of candy or a bite of a cookie or cake…And actually, maybe the caring parties are to me as Odysseus’ ship mates were to him and they have wax in their ears (read: a working pancreas) to protect them from the Sirens (read: evil food) but have bound me to the ship so that I can hear the beauty of the Sirens song but not cave into an atrocious decision that would lead to my death.
The only problem with this, the Sirens that sing to me don’t sing the beautiful song that they sang to Odysseus and even though there’s people to “protect” me, they’re going to get taken out at some point as did Odysseus’ men when Scylla ate his sailors. There’s only so much protection that one can provide and eventually the person being protected will fall, either due to our own devises or someone else’s. And the protection that people were trying to provide for me actually sends me spiraling downward. I can only resist for so long, and if I’m deprived long enough, when I fall, I fall hard. And that fall is usually worse than if I hadn’t been protected in the first place.
I had to smuggle when I was younger, if I didn’t smuggle, I wasn’t going to get it. I can remember when I didn’t feel as though I was getting enough pretzels at lunch, and so one day I took some to my room and put them in my dresser drawer and in the afternoon I got caught eating them. There was another instance where I got a sugar free Popsicle while everyone else got Klondike bars. And so after everyone else had gone outside, I went back inside, stole the last Klondike bar from the freezer, went to the bathroom and ate it. And the next morning when I got called on it, I lied; I lied for years about that incidence, about how I didn’t take it.
Yup, that’s me a smuggler and it all started with Halloween Candy. I’m improving though. 15 years after my first smuggling act in the name of diabetes, I ask mom what we’re handing out this year for Halloween. She tells me a variation of what she’s been telling me for 15 years “It doesn’t matter, you can’t eat it anyways”. That was the night before Halloween. On Halloween, when I got home, I wandered around the house a bit, crossed the path of my parents and went for the bowl, right in front of them. As I dipped my hand into the bowl mom scowls and says “Only one” I roll my eyes (as if I didn’t know exactly what I was doing) and mutter under my breath “Yeah, I know”.
I took that one Reeses Peanut Butter Cup and stared at it. It was the only one I got, did I want to eat it now or later. Would I be able go out after they went to bed and get more? I didn’t know if I’d get more, but I ate the piece I had, I ate it slowly, enjoying each bite. For some strange reason, after the house was dark and quiet and everyone was in bed, I didn’t sneak out to the kitchen or living room get more candy.
The next morning, in some kind of state of amazing self control as I headed for the front door to go to work, I passed the candy bowl, still full of chocolate candies. I backed up a few steps, looked into the bowl, and went to reach for a handful of candy and then something stopped me and I turned back towards the door and I left. For the first time in my diabetic life, after 15 years of being a smuggler, I didn’t smuggle Halloween candy this year.
This is excerpt from my NaNoWriMo project: Confessions of a Type 1 Diabetic. It’s 1872 words for the curious.
Confessions of a Type 1 Diabetic
It’s all NaNoWriMo’s fault. It’s the push that I needed I suppose. And thus, I’m starting my novel, which is more of 50,000 words from me that makes absolutely no sense if you were to string the writings from one day to another together…but like I said yesterday, and like NaNoWriMo said, “If you believe you’re writing a novel, we believe you’re writing a novel too.”
I just went and looked up novel because that’s how out of it I am “fiction” this is real, there’s nothing fictional about it…is it still a novel?
Ok, I’m not going to worry about the semantics of it all. But I will say this, I registered a domain last night in preparation for this project. Kind of just a statement that I’m doing this. After a whole 2 days of thought, I’ve named my 50,000 words “Confessions of a Type 1 Diabetic” and I’m making my mark on the internet with it. I registered ConfessionsofaType1Diabetic.com. Nothing will be done with it until after November except for maybe a pointer to the new Confessions of A Type 1 Diabetic category on this site…I know it might be a little preemptive, but you know what, I jump in head first on most things I do, this is no exception.