Dear Diabetes, you suck.

a front end developer who also happens to have type 1 diabetes

Tag: Emotions

holy fucking shit

Looking back at blog posts I have been working on #openAPS in one capacity or another for the last two years. Just double checked it, I placed my first Adafruit order for xDrip and OpenAPS parts on May 11, 2015… that puts us at over two years. What has held me up this long? Well there was a lot of life stuff for sure… moving to DC, living at home, being seriously sick with diabetes fall out, moving to Seattle, changing careers, 6 month intensive software development program, new job, freelancing, another new job, god knows how much emotional turmoil, therapists, new anxiety drugs, my grandmother passing away, one of our family dogs passing away, gender feels, relationship feels… it’s been a jam packed two years, but I can’t help but think how different it could have been if I had had balanced BG numbers through that time… but I just wasn’t ready. Honestly I’m barely ready now, I was not prepared for the emotional turmoil accompanying starting openAPS – it’s like I don’t feel like I deserve these numbers, I’m waiting for the other foot to drop, for it to be taken away, for it not to work, to go back to struggling…  that maybe this would ever not be a limit, or a worry or whatever… it’s like just being in constant shock. I’m just sort of floating. I have so many things that I should be doing right now, but instead I’m just here, existing, watching the terminal with my openAPS logs and my nightscout dashboard in disbelief. I was not expecting all these feelings. I’m glad it’s a busy weekend with lots of friends, I’m not sure how I would be dealing otherwise. Catching the lows has eliminated the rebounds and kept me so much more in range I can’t even believe it. disbelief… that pretty much covers it.

just stay still


It is very different being a diabetic v. caring for a diabetic. Actually, I guess I’m not really qualified to say that, as I can only speak as a diabetic, but what I can tell you is that it irritates the hell out of me when I read stuff written by parents that waxes on about how hard it is to deal with their kid’s diabetes. fuck you. I’m not a parent. I know there are things that I don’t understand about that relationship, responsibility, position, but I can tell you that as a diabetic, i.e. the one who will actually die if I fuck something up, I have a really hard time feeling sympathy for an onlooker. I know that is harsh. I know that there are people in my life who have worried about me, had to watch me go through things that suck, watch me behave in ways that might not necessarily be the “best for me,” wonder if I’m going to be okay — and if I wasn’t open to hearing their opinion, stand on the sideline and wait for me to figure it out myself, or die trying. I realize that all of this might sound a tad dramatic, but that’s how I feel right now. The other part of this, which it’s taken me longer to get to, is that if I’m honest, I’m jealous of diabetics that were diagnosed when they still had a support system at home. I feel so alone sometimes. Even though I know that I had quite enough arguments with my parents growing up without another thing to fight over, let alone one with such gravity, but I can’t help but think, then I wouldn’t be alone. although… then I don’t have to take direction from anyone either… scratch parents, thank god I wasn’t married, that sounds worse than being diagnosed as a kid — at least resenting your parents is part of the deal, I can’t imagine going through that with a partner. Even the small taste of that I had was horrible — having to worry about another person’s reaction to what you’re already dealing with is a pain in the ass, it’s hard enough for me to deal with me. but then I guess that’s the catch, maybe I am better off on my own — is it possible to care for a diabetic without meddling in their diabetic life/choices/status? if you care, then you want to know, but then where does that leave the diabetic? I don’t need or want to have to report my “status,” even when asked in passing, especially by my parents, I find it super irritating (I know this reaction is not rational or polite). I know that people want to care, or that they do care, but rather than care, I wish they would just try to understand rather than try to help. Unless you can magically fix my pancreas you can’t help me… honestly, even my endocrinologist can’t really help me, all this shit is just a massive guessing game, so could you just be there? Just stay still, and love me. that’s all I need, and that’s all I ask.

Drop the rock.

DroptherockI was having trouble concentrating today, after hours of fighting to stay concentrated, then falling into tv, fading into over thinking, and then all of a sudden I knew I was on an edge, not a relapse edge, but an edge all the same — I text a sober friend, and another friend, and my sponsor… anyway, the result of all this reaching out for help (the thought of which still makes me cringe) was a conversation with my sponsor which made me feel a lot better — she said to me that in speaking with her that I had “dropped the rock.” I’m not sure if this is what she meant by that, but what came to mind for me was running underwater and needing to drop the rock in order to surface for air… this was by far the coolest picture I was able to find of this… I see myself as the swimmer on the left. This is where I stop trying to separate parts of my life — I am emotionally upset, I still check my blood sugar, I don’t assume it’s one thing or the other, I just have to treat the whole Sophie, as a whole, in whatever manner is required at that moment. And at this moment while I need to change my pod, and do a bunch of other things I’m sure… all I can think about is how violated I felt when my doctor took my PDM away and made changes to it without explaining or including me in the decisions. I accept that my reaction to this is my own, but it does not make it any less valid. It’s been over a week and I can still feel that empty exposed feeling of sitting in that doctor’s office being told off, and then they didn’t even know how to make the changes properly and had to then hand my PDM off to yet another person to adjust/correct/fix whatever it was they were doing. I don’t even remember what she was saying or what they did. All I know is that it doesn’t seem to have done much, the best thing that has happened for my diabetes since then has been going back to crossfit — while a bit scary, it seemed to have a great effect on my numbers for the rest of the day — I will need to remember to eat more, but my post-workout numbers were encouraging. Ending on a high note… planning on working out again tomorrow… TBD


Emotional Robot


bonus points if you know where this specific robot s from…

Lately I feel like I have the emotional capacity of a robot. It’s easier to just block everything out… so far it’s been one of those weeks where I’m not even sure my dog loves me… it’s ridiculous. I know objectively that that is not true, just as I objectively know that I have feelings, but it doesn’t feel that way. It feels like a giant ice cube has formed around my heart… radiating cold out to the rest of my body… pulling rank and keeping every sense, every cell in line… with the explicit order not to feel anything. I can’t even let go when I’m on my own. it’s like I’m even hiding from myself. I can feel the heat rise in my chest, behind my eyes, but even if I think about allowing myself to express it, my body suppresses it like an automatic reflex.

the only time I seem to be able to express anything is when my sugars are really out of whack because I seem to lose control a bit… that’s when I want to write, that’s when I feel awake… so  do I only have feelings when they are triggered by my blood sugar? If so, that’s not good, on so many levels. Not feeling is a problem. High sugars are a problem. Feeling because of high sugars… not good. a recipe for misbehaviour and disaster.

I just wish everything was okay. Or that I could be sure of it. I just want everything to be okay. to be normal. I know… there’s nothing and no one that is “normal,” but seriously, I am so beyond the range of any concept of the “normal” range — I am absolutely dependent on medication to keep me alive, I have two remotes that control chemicals in my body, in addition to prescriptions and an emotional program for living… fuck that. fuck all of it. I hate my remotes, and I hate that as soon as I’ve gotten used to an omnipod placement I have to move it again… and the scarring from these is not going to be good — way worse than the dexcom, I don’t know if it’s because the cannula is larger, but I can tell when I take them off that the injection site is going to take longer to heal that the dexcom ones do… great… now I can just wait on breaking technology (and the FDA) while getting scarred up all over. Great. fucking fabulous. I’m just so fucking mad at all of this… and this is what happens when I let it out, so in order to move through the day to day I have to just swallow it down and keep it all in. Everything related to any feeling, good or bad, has to stay frozen because I can’t handle the feelings at the top of the list. I know how to fake the funk, how to work a room… if I need to share “feelings” for whatever reason, I keep it light, “my family is crazy, I deal with it by sending them pictures of my dog”… small talk about work and whatever I’m watching on Netflix and Discovery channel…  that’s the stuff I can say, the shallow stuff… I can’t talk about anything real. One chink to the very thin armour and I’m going to crack. I’m barely holding my shit together. Frozen helps. Right now it’s the only way.

eat something, feel like shit

2014-08-18_16-08-13today I had a lunch meeting. when the food arrived, I was engaged in the conversation and didn’t want to pause to give insulin (and/or answer questions) — even though it would just require one finger stick/test, a little carb-googling and entering numbers into the omnipod PDM… now that I write that out, it seems more reasonable to skip it… that’s a lot of hassle. Anyway, so I skipped giving my insulin at lunch, I gave it right after, but still felt the affects of the high, almost decided to go home for a nap instead of working from a coffee shop… I needed outside circumstances to keep me working… coffee shop it is. Anyway, so I’m sitting here, getting a fair amount of work done, when I’m like… I want a cookie… I can’t banish the thought out of my brain, I carb-google it and it’s not so bad, so I go to buy it, turns out what I thought was a cookie was actually a scone… I don’t know the carb count off hand, I know it’s bad, I order it anyway. I walk back to my table, knowing that I am choosing to do something bad, calorie king says 70g… fuck it. I take my blood and enter it all in… and now I’m feeling sleepy again… funny, “I wonder how that happened?” she says sarcastically… fuck me. And I still have work to do… and I can’t stop thinking about things that I can’t have. It’s driving me crazy. it’s like my mind is on a loop. sometimes what I want and what is good for me is not the same thing… or so they tell me, I guess I can always choose to disobey, I’ll try it this way for a bit… one moment at a time.

Still and always broken

shattered-glassI feel broken for so many reasons. lately it’s been emotionally, in all directions. fighting bad habits and emotional decision making, even though it feels completely wrong. trying to “save” myself with “healthy” choices, that only make me feel sick and ripped up inside. I’m trying to do the “right” thing and take direction from people I trust, but it hurts and feels wrong. even sharing this here feels “against the rules” — like I’m supposed to suffer in silence because it’s “right.” I guess I can try it, if it doesn’t work I can go back to my way. some may call me self-destructive, while looking at my past behavior objectively I am likely to at least admit that they have a point, but at least I was allowed, or chose to follow my heart — not just in matters of the heart, but in matters of everything. I have always trusted myself, I don’t know why, now, I am choosing to put my faith in others when it feels so wrong. If I don’t know what’s best for me, how can anyone else? I’m not a child that needs to eat more vegetables…

I know that I am not an island, I have accepted that. I am dependent on insulin and my machines, I need people that care about me, who I can care about. But all this seems to have been thrown to the wind. I thought I had felt and healed the wreckage of years, with the acknowledgement of my errors and corrective action — I did not see, in full, the damage that needs to be addressed.

I feel like I have been whipped across the back, on top of raised scars barely healed, leaving open wounds on top of previous wreckage… I don’t even know if that makes any sense, but it is the image that comes to mind when my emotions turn into  day dreams. I thought I had avoided this, but turns out it was just delayed, almost as if the wounds have been there the whole time, but I just noticed. the healing that I assumed was instantaneous is requiring more time, more care, more attention. and I’m bitter about it. I am done with the past affecting my present. I want to be able to do what I feel is right without having to ask for a double check. a double check of my sanity. of my blood sugar. of my meds mix. I just want to be. is that so much to ask?

So… I’m going to die and I most likely know how


Sometimes diabetes feels like a slow suicide… suicide by lack of pancreas…

It recently occurred to me that I will probably die of complications with diabetes. I have considered before, that diabetes could cause death, through low blood sugar, seizures, dka, and other fun things — but I had considered death only in the acute… something bad happens and it immediately causes my death. What I had not considered, is that no matter what I do, I will most likely die because of diabetes, or some complication there of. Now there may be some of you out there who might think “No way!” or “It’s totally manageable, stop overreacting” or “You’re going to be fine… are you.. you know… on your cycle…” — but all jokes aside, the way I see it is that no matter what I’m going to get old, as I get old I will face the consequences of age and of long term semi-controlled blood sugar (even if we’re really good, we’re not a pancreas) — the affects of living without a pancreas will then compound with me being old and therefore contribute to and/or cause my death… bringing me back to my original point, that I will most likely die of complications related to diabetes. This fact is extremely depressing. I am 26. I am also considering how I am going to die, not in a depressive/suicidal* way, but in a seriously, when I’m old, assuming nothing random takes me out before then… this shit that I’m dealing with right now.. this diabetes bullshit… it’s going to kill me. quite literally. no jokes. fuck.

In some ways I start to feel this out of body “okay, if I’m going to die, then none of this matters…” — except in my case “this” is everything, and even if I’m going to live for the next ten minutes, something has to matter… I mean my dog is sleeping at my feet… she matters. Then something real, like what I just said about Casey being at my feet… it brings me back and then I’m left here, the same as when I started this post, just scared — a scared, 26-year-old type 1 diabetic, who will most likely die of complications related to diabetes, sitting at home, alone, writing to you from her computer…

And then I hear a friend, telling me to take it a day at a time — and then I want to punch that friend in the face and tell them that that is impossible. It feels impossible. Some part of me knows that I’ll be okay for the rest of tonight, and that I’ll probably wake up tomorrow, and that will probably be okay too. but when I get further ahead than tonight, I start to get scared again. this is where I hear my friend again, telling me to take it a day at a time. I still want to punch that friend in the face, but this time maybe I’ll settle for just ignoring them and continuing to be mad. and scared. and alone.

*Here’s my plug for mental health — if you or anyone you know is actually considering suicide, PLEASE seek help either through your own friends/family, or check out — as a reminder, I am not a medical or health professional, please seek guidance from a professional as needed.

**Bunny Suicide Drawing by artist Andy Riley

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