my blood sugar is ocean tides, rising, falling, rising.
don’t look at me. look at the moon.
my blood sugar is ocean tides, rising, falling, rising.
don’t look at me. look at the moon.
Every time I meet someone with diabetes in real life (which isn’t often), I immediately have so much to say and so many questions. I just want to know… how are you going through this life? What are you doing? How are you doing it? I want to know everything, although I honestly probably say less initially than I even would when meeting a non-diabetic person. Because it’s like… we don’t know each other *at all* but we also already know *so much.* So yeah, I don’t ask all of these things that I always want to know, which are probably way more than you’d want to tell me anyway… not because it’s too personal (or maybe it is, I don’t know) but really, I’m very interested in the mundane stuff. Like, let’s talk about showering for a minute. Last week my blood sugar was 85 when I went to take a shower and minutes later, shampoo suds dripping down my shoulders, I had to climb out and drink a juice box in my towel. It was cold and annoying. Has that happened to you? I am interested in that.
And dreams. Today around 4am I woke up to a blood sugar around 75 that, after I went back to sleep without drinking the juice box that I’d meant to drink, continued to drop. I had a dream that I was driving a car and I was hairs away from rear-ending someone. I was having a hard time concentrating on driving. There were really two Me’s in the dream, because there was Dream Me #2 watching all of this like a movie, trying to figure out what Dream Me #1 was doing, watching the car swerve, wondering Is she driving drunk? Dream Me #1 pulled into a driveway and stumbled inside and told her mother that her blood sugar was low. Dream Me #2, still watching, thought, Ooooooh, okay, she wasn’t drunk. Mom asked Dream Me #1 what my blood sugar was. 57, I said. I was trembly and weak. I woke up, then, and continued to be trembly and weak. Of course, I was low, and I probably don’t have to tell you what my blood sugar was when I checked it. But, just in case, I’ll tell you anyway. It was 57.
Do you ever dream about diabetes? Is it ever true?
Also, what did you eat for breakfast and how did you decide to eat that and do you eat the same thing every morning? How much insulin does your body need for half a cup of mashed potatoes–I won’t think better or less of you, of course, I’m just always curious about the different needs of diabetic bodies–and in what ways do you exercise and which finger do you prefer to prick? Where do you take your injections usually, or what is life like with a pump and has it ever fallen in the toilet, and what are you like when you’re low–do you get angry, do you cry? have you ever passed out?–what’s the highest your blood sugar has ever been and tell me the scariest moment of diabetes and the funniest and has anyone ever been mean to you about it and how old were you when you were diagnosed and did you feel like the world was ending? Are you lonely? How did your last A1C make you feel? (I know, I know, but I won’t judge you, I just want to know humans with diabetes and how they actually live, I can’t base my life off of what doctors tell me, I’ll lose my mind, I’ll hate myself. Let’s just be open and honest because we’re the ones living it. Let’s make it more livable for each other.) Do you re-use your needles? Are you shy about testing in public? Do you have a lot of late night lows and do you also get excited when your BG is exactly 100 and where’s the weirdest place you’ve ever found a used test strip lying around? How much do your friends know about diabetes? Do you talk about it with them; do you want to? At what BG number do you feel the most safe? How has your relationship with the illness changed through the years and are you more or less afraid? What are you most afraid of and what is your go-to cocktail and what is your blood sugar now? What does a BG of 350 feel like in your body and what’s the deal with ketones, do you really use those Ketostix or is it in the same boat as changing your lancet after every prick? Do you have trouble sleeping and what are you going to eat for lunch? Do you like coffee? Are you doing okay over there? Is there any way I can help? Tell me your stories and I’ll always be listening and I’ll answer all of your questions too, my friend. Don’t worry.
Do you know a lot of other diabetics and where did you meet them and can I ask them all of these questions too?
And really… where do you put your body, hour by hour?
And, tell me, please, how do you cope inside of it?
There must be those among whom we can sit down and weep and still be counted as warriors.
Discussing diabetes didn’t come easily or naturally to me. Upon diagnosis, I wasn’t immediately swollen with a need to advocate, express, or connect. I swallowed the diagnosis quietly, called my friends and told them what was going on, and tried my best to enter high school two weeks later, head held high, as a normal 14-year-old girl.
I went to the nurse’s office three times a day: in between my second and third classes for a snack, before lunch to check my blood sugar, and after lunch to take insulin. The diabetics at my high school, there were four or five of us, each had a small plastic container with our supplies in it. The one next to mine belonged to a blonde girl named Stephanie, who was two years older than me. She was the only plastic box that I could ever assign a face to, the only person I ever crossed paths with in that school. We were both shy, and it seemed embarrassing to me at that point to spark up a conversation about chronic illness. Once, Stephanie’s mother came into the nurse’s office with her and suggested Stephanie and I exchange phone numbers. In that fumbling, awkward teenage way, we complied, but neither of us ever reached out. She graduated a year later, I think, and a year after that, she died in a car accident. I remember recognizing her in the news article, and reading the line, “She was working and volunteering for the Juvenile Diabetes Research Foundation – she’d been diagnosed with the disease at age 6.”
I didn’t meet anyone else with type one diabetes for a long, long time… not until I myself started working as a PR intern for the Juvenile Diabetes Research Foundation the summer after my sophomore year of college. There, one of the other interns, again two years older than me, had diabetes. We didn’t really talk about it, though. Sometimes one of us would make a passing comment or complaint, and the other would say, “Yeah, I feel you” but that was pretty much it. At that time, I don’t remember the desperate need for camaraderie that I’d felt many times before and after.
Amidst all of my friends and co-workers and classmates, diabetes was there and not there. It was there when I was drinking a juice box or taking a shot or sliding blood onto a test strip, only in that split second of visible diabetes management. In those moments, someone might strike up a conversation about it, which I always appreciated because I never talked about it unprompted. Often they would ask if it hurt. Often, they would say, “I never even knew you had diabetes because you never complain about it. You handle it so well.” How much pride I took in that… thinking that my silence was strength. Props, you’re not complaining about your chronic illness. You’re not letting diabetes “get to you.”
Talking about it isn’t weak. Talking about it is pivotal.
When I was 22, in the spring of my senior year of college, my life with diabetes shifted by way of the Diabetes Sisters conference in Washington, D.C. On a whim, I applied for a scholarship to attend, and a few weeks later, I got it. I had no idea what a diabetes conference was or meant, really. But, I showed up alone, and I met Kerri and Stacey and Karen and so many others. A group of us went out to dinner that first night, a diabetes tribe, and I remember worrying about it. Would they judge me? What should I order… a salad? Water? How do we all live?
Burgers were had by some, beers were had by some, (me included.) I ordered a salad, not because I felt like I had to, but because it was what I wanted. We talked and we laughed and we ate and we took insulin. How do we all live? We live like human beings. Like people, awake and alive and much more than an illness, but who also seek each other’s support in that illness.
Those dear people encouraged and inspired me to write a blog, and so Coffee & Insulin was born. And so I learned what the #DOC (Diabetes Online Community) is. And so I learned a thousand new ways I’m not alone.
Then, very recently, I met a woman named Amy who also has type one diabetes. I didn’t know how much I needed this beautiful friend… someone who lives in the same city as I do, who I can sit next to on a couch and weave in and out of diabetes conversation with, who I can text just to say, “I think I forgot to take Lantus this morning. That sucks.” and who always understands. I didn’t know how much it would mean. That not-so-aloneness changes things.
It changes things that I’ve struggled with for so long that I forgot there was any other way. I found a journal I kept my senior year of high school, when I was 17, yesterday. The very last entry was titled “I think I just had the worst low blood sugar of my entire life.” At that point, I’d had diabetes for under 4 years. The entry was pretty short, and talked about how trapped I felt by diabetes. I said I hated feeling like death, that I was tired, that I needed to be studying for exams. But more so than that, I spoke candidly about how alone I felt. More than anything, the loneliness. I wrote:
I want someone to understand what I go through. I want someone to listen to me talk about all my fears that come along with this and all the struggles. —I just want someone to know how hard this is for me and understand and tell me everything is going to be okay, but I can’t tell anyone because I don’t know who would listen.
I read the line, “I just want someone to know how hard this is for me and understand and tell me everything is going to be okay,” several times over, astonished at how this life can unfold. How I couldn’t have known what would be, six years down the winding road. Listen, Amy said to me the other week, after I wrote about feeling lost in the darkness of diabetes, everything is going to be okay.
It is, right? I want to believe that. I think I believe that. I’ll keep repeating it until I believe that.
Still, some things are less okay than other things and some things, in essence, are not okay at all. I doubt having diabetes will ever really be okay with me. I can’t really imagine ever thinking, A lifetime of diabetes? Yeah, this is fine. But I also think even when it’s not okay, it’s okay. Here we are with a life, full and throbbing. Here we are.
It’s astounding, it’s left me kind of speechless lately, how much more Okay the Not Okay things are when we connect with those who know, those who so profoundly get it, those who share the code of a body gone haywire. Even when we don’t actually know each other at all, we still know each other. It’s in our bloodstream, in our bone marrow. It changes things.
We’re going to be okay. I just didn’t know.
If you are like me, you might wake up at 4:12am on a Wednesday morning, trembling.
You go to bed around 11pm the night before. You shut your bedroom door, turn out the light, rest your head on your pillow… finally. But you remember you didn’t set your early morning alarm for work, so you twist over and do that. Then you remember you didn’t check your blood sugar.
There, you hesitate.
You’re so tired.
For a second, lying there in the dark, you think to yourself… what if I just don’t do it? I think I’ll be okay. I think I’ll wake up tomorrow. But you know better. You know you have to do it. There’s really no other option to it, any of it, if you want to be okay. (Trust me, you do want to be okay.) You toy with the idea anyway. I could just go right to sleep. You know you won’t–can’t–but holding the option in your hand for a minute makes you feel a little more like you’re the one that makes the rules to this game.
You peel your body out of bed, and pick up your glucometer across the room. You prick your finger with the lights turned off. The meter reads 124. You think, oh, that’s a nice number, but you’re aware of the unease nestling itself into your mind. It’s a nice number… for now. Your blood sugar swings low into the night these days. 124 is good, solid… and yet you don’t feel safe in yourself.
You go downstairs to the kitchen and stare into the cabinets. You need to go grocery shopping. You open the refrigerator and think to yourself, what can I eat that will sustain me through sleep without ruining this lovely little blood sugar? Where did I go wrong last night, causing the 234 this morning? How can I get it right this time? What is enough? But what is just enough?
If you were a cartoon, there would be a tornado of numerical cartoon calculations swirling around your head in this moment. You’d find the perfect solution, a giant yellow light bulb flashing over your head. You would devour whatever it was that you found. But since you are human, it is just you standing there alone, looking at tangible food and seeing it as unavoidable numbers and causes and effects.
The carrots, the thin slices of turkey, the hardboiled eggs… none would be enough. The pear… a high, high, high and a crash waiting to happen. Your roommate’s cereal… don’t even look at it. Don’t even think about how much you miss cereal. Your blood sugar thanks you in advance.
Your mind scans the options, works to appease that precious, wild human body. You’re not in the least bit hungry, but that matters little. Eventually you decide to eat two graham crackers with some almond milk. That should be okay. Right? Right? It is now near midnight, and you shuffle back to bed.
You lay down, thinking of a conversation that happened the other day at a friend’s house. He asked you if you were hungry, and without hesitation, you replied, I don’t know, let me check my blood sugar.
What do you mean? He looked at you with a confused expression. If you’re hungry, you should eat no matter what your blood sugar is. Appetite isn’t just a number on a screen.
Sometimes, you said while licking a drop of blood from your fingertip, it sure feels like it is.
At 4:12am, your continuous glucose monitor beeps you into awareness. Uncomfortable awareness. Your limbs are heavy and shaky and cold. You feel like you’re perpetually falling into yourself. Your blood sugar is 53.
Your hands fumble for the juice box that sits beside your bed for times like these (there have been many.) You slurp it down and slide back into your sheets. Sometimes after a late-night low, you go right back to sleep, unfazed, unfettered. Other times, like this time, the rattling of your heart and the stun of the low hold you awake for a long, long time.
A little after 5, you manage to fall back asleep. At 5:40, your alarm clock goes off.
Here is where I’ve looked up and found myself.
Medically, since coming back from Amsterdam a few months ago, I’ve felt like I’m sinking and waiting and spinning and shaking and guessing, guessing, guessing all the time.
I feel like I have an ever-growing list of Shit I Need To Figure Out.
I feel the weight of this infinite illness that I can’t afford.
Since losing access to my Dexcom, I feel blind. Like I have no sense of blood sugar control, like I don’t know my body, like I don’t know how to even begin to take care of myself. I feel very, very, very in-the-dark. Lost in the deep, dark diabetic forest.
This isn’t diabetes burnout I’m struggling with.
This is the elusive diabetes itself.
I woke up today with that line by Rilke buzzing through my brain, “You must change your life.”
I can do this, I thought. I can. I felt okay about it. I had the day off, I could certainly take a small step in the direction in which I need to go. That is, the opposite direction of the way I’ve been going.
I had my laptop in front of me with about 47 tabs open to my new health insurance policy, to Dexcom, to the supplier that Dexcom uses, to eye doctors, to endos, to the black market in an attempt to sell my soul to afford these things.
So, I began by calling Dexcom. I just can’t play this game without a CGM. I really can’t. And I don’t want to. Having a Dexcom made managing this disease feel possible in a way that is now lost to me. And that loss, my friends, is mighty dangerous.
I’m not going to go into every excruciating detail of the phone calls that ensued for far too long, but just know it was a lot of “Please wait one second while I transfer you” and 20 minute holds and lots of back and forth between companies and suppliers. In the end, of course, I first needed to make an appointment with an endo so I could get the verification I need for Dexcom supplies. But… I’m just getting back on my feet here in this city, and I didn’t like my previous endo, and I want a new one. Round and round and round in the circle game. Cue many more debilitating phone calls.
They went a lot like, “Sorry, our next available appointment is in 2016 and your co-pay for this next-year appointment, on top of the exorbitant amount you pay monthly for god-awful health insurance, will be $70 because in the healthcare system we live in, it’s either your money or your life. See you in January, good luck getting by until then. Cheers!”
So, guess what?
I didn’t even end up making one appointment today. I didn’t set one thing straight.
My blood sugar dropped. I cried into my hands.
Back into the forest I scurried.