Dear Diabetes, you suck.

a web developer who also happens to have type 1 diabetes

Tag: Frustration (page 1 of 7)

A Large Dose of Reality

From Wired Magazine’s article on hacking type 1:

“Diabetes was no longer a death sentence, but to this day it still means a life shackled by regular blood-sugar checks, insulin treatment by injection or pump, and the constant threat of overdosing on the very medication that’s keeping you alive.” — this part of the article I identified with, it is a very clear and raw explanation of my reality… but this next part I was not ready for…

“Indeed, one in 20 people with type 1 die from severe low blood sugar, not the high blood sugar that was the problem in the first place. It’s a delicate balance.” — wtf. I’m too shocked even to fact check this… I mean I’ve been scared, but maybe I haven’t been scared enough…

Talking about monitoring his son’s BG… “One night, it was 36. Any lower and Evan could have fallen into a coma. He could have died.” — it’s like I haven’t really heard anything anyone has been saying for the last eighteen months. I’ve been trying to carry on as usual… I went on a fucking business trip three days after being diagnosed… Before they had even confirmed a type 1 diagnosis… I should not have been traveling alone, wtf. How many times have I hit lows in the thirties and occasionally even in the twenties while I’ve been alone in my apartment, honestly I couldn’t even tell you… too many to count… fuck, I can’t believe I’m alive. I’m trying to be grateful and have faith, to help pull myself out of fear… But right now it’s not working.

reborn.

It’s as if my life before never existed. Like I was reborn the day of my diabetes diagnosis — a whole new life with this terrible new addition. It feels like the me before died. I’m so afraid of everything, but every moment, every thought, action, and word is covered in the rubber coating that is the glib “I’ve got this, it is what it is, and I’m doing my best” line. Maybe if I say it enough I’ll believe it. I hear myself sometimes when I’m talking to other people, sometimes they’ll even comment on how well I’m dealing with this and occasionally my real voice in my head gets through and calls “bullshit” — I hear the words coming out of my mouth and in my head I know that it’s all a show…that in reality I’m barely holding my shit together, mostly just through complete and utter fucking denial. And if I’m totally honest, somewhere deep down, I know that that denial could kill me, but that’s a gamble I choose over living in fear every day… I also know this is the wrong choice, but the other is more than I can bare. So here I am in total denial with bursts of awareness that this far have resulted in no action. It occurs to me that I should mention that I am doing the mechanical things, I take my blood sugar, I bolus for meals, I sort of try to eat right, except when I don’t feel like it… I’m not entirely non-compliant, but I am not giving myself my best chance at a full and complication free life, I’m on the “just survive” track, I want to be on the “thrive” track, but I haven’t found a way there yet. Playing with technology solutions has helped, but I still manage to separate the project from myself… I have my numbers in a few programs, but I am yet to take the next step to really analyze them… I know this, fuck, this is what I have done professionally… Data is no use without analysis, but I don’t want to see my analysis… I don’t want anything less than an A+ and I know that that is not what I’m going to get from my data… I’m think that I’m going to see “you are a fucking moron and you are setting yourself up to lose both your legs by the time you’re 35 — oh yeah, and there isn’t any pattern so there is no clear action you can take to try to fix this, so have fun continuing to fuck everything up” — who would want to do any work to see that message, clearly not me…

The thought that keeps coming to mind is that I can’t do this alone… I need to accept help, I have asked for help, that’s a big deal for me, but accepting it is a whole other ball game…

exposed and paralyzed

emptychair

I’ve written about this amidst rants over the past week or so, but I wanted to address it clearly because I feel that it’s worth the time. When I went to the doctor, she took my PDM, and with very little, hurried explanation, she messed with the settings and then handed it back to me and walked out — this is what happened from my perspective, objectively I know that this is probably not exactly what went down. As soon as she took my PDM, something about the way she took it triggered something in me, and I went into a fog, all I knew was that she had something that was mine and she was messing with it, and I couldn’t or didn’t do anything to stop her. I felt exposed, but paralyzed in the chair, like I was observing the scene standing behind my chair, rather than being there myself. I could have spoken up, asked questions, asked for my PDM back, asked to be shown what she was changing or doing, and why — I am usually a proactive patient, coming prepared with questions, participating my own care. This time I was apathetic and shutdown, I was pissed off when she wanted me to come in earlier than usual, irritated to be judged solely on my numbers without being given the chance to explain, or asked if there was anything else going on — just the assumption of non-compliance, I was insulted. I didn’t feel like her assumptions warranted polite reply — instead, I stayed as I was, quiet, still, in my chair. Not asking any questions, no protests, just waiting for her to leave. and she did leave, and then I was just there, wondering what had just happened, what I was supposed to do — she said something about following up with the nurses to make appointments, like hell was I going to do that. A better voice in my head told me that I probably should actually do that, but then, I know what I’m supposed to do in a lot of situations, and that definitely doesn’t mean that it necessarily happens…

how did I get here?

love-actually-bill-nighy-holiday-gifs-and-movies-shk

I’m 27. I’m sober. on psych meds. on insulin… oh yeah, because I’m diabetic. living in Hermosa Beach, working out of my apt for the most part. some people believe I’m smart and/or competent. both could be debated depending on the day. that imposter syndrome thing… it’s real, sometimes I even shock myself when I know what I’m doing. how fucked up is that? how did I get here? more like where the fuck am I? where am I going? that’s an even more outlandish question. who the fuck knows. do I care? I must if I’m writing this. this thought keeps popping up — who is reading this? do I need to be concerned about this? everything I put out here could definitely be used to question my sanity… I mean, fuck, I question my own sanity on here… I questioned it about two sentences back. I am one person, true, there is no separating the sobriety from the diabetes, from any other aspect of my life. Maybe I could be more polite about things, but let’s be real that’s not authentic to me either… haha. authentic, there’s a loaded word, blatantly misused by so many — if you have to state it over and over, did you ever really have it to begin with? anyway, I’ve never been one to mince words, so I guess why would I start here — the place I started writing just for the purpose of not having to filter myself. not filtering while also expressing those thoughts in open forum for the rest of the world to read, interesting concept. I guess I didn’t give that contradiction all that much thought before I started. too late to stop now. and let’s be real it feels good to get this off my chest, dropping the rock as my sponsor told me. somehow this is different than just writing in my journal, or typing in an empty document — I hope someone reads this and for whatever reason it causes them to pause, even if they just laugh at me because they think I’m ridiculous, it it could help someone who feels some of the same things I feel that would be great too, but let’s be real I am a bit ridiculous, so at least if someone gets a laugh out of it, I guess it’s not all for naught. who the fuck knows.

just stay still

threehearts

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

 

…and a new A1C in a pear tree

partridge-pear-tree-21405152 So I knew I was having trouble with my sugars, I figured my dexcom read out wouldn’t be great, but I wasn’t prepared for this… my A1c went from 6.9 to 8.0 over 4 months. Now, relatively I guess it’s not terrible, but my doctor’s reaction was the thing that blew me away… you would have thought my A1c had doubled, and she’s making me come into see another PA (not my normal one) next month… so every month, instead of every three… I objectively accept that this makes sense, my A1c jumped so they want to keep a closer eye on me… but I’m not pleased. I’m not pleased with myself, with being monitored more closely, with being treated as a petulant child, with acting like a petulant child, with feeling like an idiot, with feeling exposed, and alone. Objectively, I can see this for what it is, I was away from home, my numbers haven’t been great, my doctor is on my side, she’s there to help me — but it doesn’t feel like that, I don’t want to be told what to do. Coming out of that appointment I resolved to do better, I don’t want to be told off again — I’m a fucking adult, but now away from home once more, I just had half a bagel… I know it’s not terrible, but I didn’t really want it, I was just working in the kitchen and my sister had brought them in from NYC, I mean they are good bagels, but I wasn’t even really hungry, they were just there and that’s 40-ish carbs that I didn’t need, didn’t really want, and now will be paying for the next couple hours, if not longer than that. And guess what’s for dinner, fucking pizza… self-control at night, I think not. This blows, I want to go back to LA, at least when I’m home I control the food that is in my apt. Oh yeah, did I mention my weakness for christmas cookies? #fml

I’m still here…and so is diabetes.

I keep thinking that diabetes will just randomly evaporate and not be a part of my life anymore. No longer with me when I wake, walk, talk, work, move, breathe, live. I’m so sick of having to consider it as a factor in every decision I make, every thought has to be followed by “do I have my kit? do I need it? do I really need it? have I got everything that I need? do I need extra snacks? do I have extra snacks? are the things I need close enough that it’s not annoying to go get them? will I be walking much? do I need to turn it down now? or should I wait? why is my sugar doing that? do I need to fix it? will it fix itself? shit, what was I going to go do in the first place?”

so seriously… on the front of random evaporation… where are we with that? close? a year? a month? #seriouslyplease

What to do when your body betrays you.

YouCantSitWithUs

Do you ever feel like this is what your body is saying to you?

I haven’t figured this out yet, but I’m trying. Sometimes I’m really depressed and emotional about this and then other times I’m completely well adjusted about it and am looking to make a plan to move forward. I’m not sure how to keep myself on track or even if I want to. I know I want to feel better, I know from an aesthetics point of view I’d like to drop some weight, lower my body fat %, but really I just want to feel better. I want to have the energy I feel like I am supposed to have (there’s that pesky “supposed to” again…). Everything seems to set me back — the last couple days I’ve been sleeping 8-9 hours and waking up still exhausted. I’m trying to listen to my body, I listen and then I yell at it for not cooperating and doing what I need it to do. I need to meet myself where I’m at… so many things that I know logically, that I need to apply emotionally. I suppose that is the dilemma… now what?! fuck you diabetes. and the rest of the shit too. it feels like everytime I think I might have a handle on things, something else goes wrong… when is this shit supposed to get easier. ugh. I just have to remember to enjoy the time in between these times. the sunset — everyday, over the water — being able to get to the beach any time I want… people vacation where I live for god’s sake. yes. positive. I’m going to end on that. xo

So I found this…

I reread this and it’s funny and not funny all at the same time… the dictation #SiriFails make it that much better. I figured other diabetics would get it…

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