Tuesday, February 6, 2018

Diabetes: What's It Like?

This is totally ripped off a post I read on Six Until Me, the Diabetes blog that originally got me started on wanting to blog about my Diabetes. It wrote about what taking insulin was like and I found that fascinating. Diabetes is an incredibly misunderstood, unique, and complicated disease with a lot of nuances that most people wouldn't, well, think to even think about. I know I didn't prior to my diagnosis - the most I had read was in a book about a girl with Type 1. She had to return her lunch tray at camp to get a "diabetic friendly" option and everybody silently judged her for it. Little 6th grade me seethed a little at how unfair that seemed. She also felt terrified of the concept of ever having to stick herself with a needle every day. My teacher, who had diabetes, made us read that book. Back then, I thought that would be... the worst hell imaginable, honestly. To face needles every day.

How trapped I would feel.

Here I am, though. It's been more years than I can count since sixth grade. Almost 13... I've got a disease I never wanted. In fact, I got the one, singlemost disease that I though was the equivalent of hell as a child. What's that like?

When I got Diabetes, I thought it was a mistake. It was like waking up to a bad dream that was real. My mind tried to grasp at the last possible thing it could to successfully rationalize that what had happened wasn't real. I tried to wake up. I remembered waking up, fuzzy, nurses passing by m room. Begging for a coke slurpie for some odd reason and fixating on it. I was told I couldn't have those anymore. I was allowed some ice chips after begging, insanely thirsty from what I would later learn was caused by insane hyperglycemia. Someone have me a potassium shot. It stung so bad. Mind you, I hated needles, so we were off to a bad start.

I spent a lot of time crying that week. I felt alone. Why had this happened to me? Was I going to die sooner? I wanted to know the answer to morbid questions. And was I really going to have to take insulin forever? Why?

When I went home, it didn't get better. I cried every night. The truth is, Diabetes is loneliness. It's incredible loneliness. Imagine having a misunderstood disease that people make fun of everytime they eat a donut. Imagine people waving it off and laughing, saying, "you can eat anything you want if you just give a shot, right?" or the opposite, "it must suck to not eat any sugar." Imagine that you know no one else with it. Imagine everyone else wants to give their opinion on what they think is right for you. Imagine how many people turn and whisper to their friends about how gross it is that you're giving shots in public. It's a glass box. It's the disease where no one can see it, but it's there, and it separates you from everyone.

Diabetes is pain. You decondition yourself to it. I give shots slowly. I slowly prick my skin, and then gauge how painful it's going to be as I push the needle into my skin, and if it hurts to much, I go to a new spot. It's the only way I can get around my fear of needles. It's shrugging off bruises from needles and getting blood work all the time and imaging your skin is a giant pincushion that everyone expects you to be okay with without asking you how it makes you feel.

Diabetes is having a life ripped from you. I used to know a life where I could eat without a second thought. When I was first diagnosed, I used to dream of those times. And now I reflect back on them. I miss what I had, honestly. It's stupid. but I miss how healthy and worry free I was.

Diabetes is money. Truly, it is. Don't have money? Insurance? Go f*** yourself. Because the importance of your life is automatically determined by how good your health coverage is. And if it isn't good, then you settle for subpar. You settle for black market. You settle for pity drugs. You settle for used syringes and a couple of packets of test strips here and there. You struggle from all the stress that having an incurable illness entails + the feeling of inadequacy and unworthiness of having a disease that you take care of by begging for medicine and then you're judged on how you don't manage it perfect by people and med professionals who think it's as easy as just giving a shot when it's not. It's calculating a hundred different factors and hoping your body responds the same way each time.

It's depression.

It's feeling trapped in a life you didn't want.

Diabetes is judgement. It's getting angry at your situation. It's getting depressed over the skyrocketing cost of insulin and wondering if there's going to come a day when you don't have any more. It's trading financial security for medication someone who owns a pharmaceutical company set the price for without thinking of what you'd have to sacrifice for it. It's a little girl, honestly, and I mean that - it's a girl, wondering how she's going to afford it for the next 7 years. I was a girl when I got this disease. Not even an adult. And I've thought about it every day since.

Every day, Diabetes is something you think about. It does not end. Wake up. Check my sugar. Do I feel nauseated because I'm sick or because my sugar is high... am I peeing at night because I have to pee or because my sugar is high?
If I give (x) amount of insulin will I be low when I'm at work at noon? I was last week... maybe I'll do a unit less.... if I'm high I guess I'll fix it... but my A1C will suffer.... I'll take the lower amount. My new vial doesn't seem to be as potent as the old one. Should I use a 5 carb to 1 unit ratio of 7 carb to 1 insulin unit?
Leaving home now. Can't find my insulin vial in my purse. Where is it? I spend 5 minutes rifling through my purse. Did I remember spare syringes? No, but there's my insulin. I'll use the syringes I have. They hurt but I shouldn't have forgotten to grab the other ones. Happens.
It's lunch. Damnit. I am low. No sense checking. I can feel it... I guess I can give insulin after I feel better... just got called into a meeting... my coworker cringes and screams every time I go to give insulin because she tells me she hates needles. I guess I'll go to the other room.
it's 4:00. Am I sweating because I'm hot? Am I low again? Where are my glucose tabs? I forgot to get a small container. I only have that big container and it's in my purse. How will it look in my meeting with my patient's family if I leave to get glucose tabs? Is that unprofessional? I mean, passing out is unprofessional. And oh my god I am so thirsty. I'd kill for some water right now. Focus. We're talking about discharge plans for patient x. I am so shakey right now. When is this over?
Okay, I'm home. I'm hungry. I shouldn't have a snack then... I'll have to give another shot... let's go get food. We go out somewhere that's not a chain. I'll just have to guess how many carbs are in this. Here we go.
I'm about to crawl in bed. Did I give Tresiba? Novolog? Should I check one more time? I'm tired... maybe it can wait until morning.... but my endo will yell at me. I'd better check. It's a little high. I give insulin.
I wake up at 1 am. I'm low. I feel weak and shaky, but I stumble in the dark to grab some food, hoping I won't be high again by morning.

This is just one example of a day in the life. It's never the same.It's easy to judge, easy to say you would do things different, but if you have to stay on top of it everyday, statistically, you're going to forget a thing or two every now and again.

This is a sad post. I've been sad lately. I'm frustrated by my illness. I'm frustrated by the technology at my fingertips that comes with an insane price. I'm sad that I have this disease I never wanted and I remember how I never had it. I'm sad because I feel misunderstood and I feel lonely and I don't want this disease. I was I could throw it far away. I'd do anything not to have it. But day after day, it's here. We're stuck with each other, so long as the T-cells in my body keep attacking Beta cells they shouldn't. This post is sad because diabetes makes me sad. And many days I'm happy, but sometimes I go through sad phases...sometimes I just need to share that to get it off my chest.

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