Dear Diabetes, you suck.

a web developer who also happens to have type 1 diabetes

Tag: Problems (page 1 of 4)

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.

vacation disobedience

FailI start everyday with the best of intentions… and then there are some biscuits, and a few crisps, and I just don’t feel like checking my blood sugar… and then that happens again, and again. I would say “oops” — but let’s be real, no one is making me eat these things, I make a choice each time I eat something, both about what I’m eating and about whether or not I check my bg and/or give insulin for it… in the back of my mind I know that if I give insulin for the amount I’m eating I’m going to rise and then crash, big time… probably over night… and who really wants to be woken up by their CGM, not me. 1) I’ll probably ignore it anyway, I know that’s dangerous, and I’d rather not die  — 2) I’d rather sleep in and not be bothered — 3) It’s annoying and I resent the whole thing

So there it is… all in all a very mature reaction /not. and to be honest I really have no inclination to change. I know I’ll have to/will get back on track when I’m home, but I’m also aware that each moment/hour/day I spend high it damaging my body — I know that that might seem extreme, but I treasure my health and I don’t want to deal with the potential long term consequences that are brought on with this type of behaviour.

Ugh. I know better, and I’m doing the opposite anyway. I woke up today feeling like shit, a mild headache and terrible nausea, it felt like a hangover, despite the fact that I haven’t had a drink in almost two years now. And how did I address this nausea… a giant cookie #fail / #win … even my reaction to that statement is telling of my current mindset. I love being here, I’ve been away almost two weeks now, visiting friends and family in the UK, but if I’m going to survive my trip — and be able to establish a behaviour standard for future trips away, I need to get this shit under control.

I know how to defeat this, I need to make the healthy choice the easy choice, drink enough water, get rid of the junk food, just don’t buy it in the first place — look at my CGM record, take in my reality and fast-forward to think about what will happen if I keep up this behaviour.

Dear god (or whatever is out there), please help. Thanks.

Love, Sophie

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…

IMG_2874.PNG

Life is phenomenal… but

tvsnowI have so many things for which to be grateful. I have nothing to be upset about. Yet I can’t shake the “but.” A friend asked me how it was going with the diabetes… and it was like my world re-imploded right then. If she had asked just how I was doing ,without the diabetic reference, I would have enthusiastically told her about starting to coach lacrosse and the amazing camping trip I went on last weekend, how work is boring, but good, and how Casey is doing well, friends are good and how life is generally amazing… but diabetes blows. there’s no way around it.

There is a frozen part of me inside — I don’t feel anything in reference to diabetes. If I do start to feel something it is quickly stuffed down and refrozen. I haven’t really talked about it, or written here because I don’t really want to address it. I want everything to be okay and my “easy” way to deal with it is to not deal with it, just ignore it, pretend that it’s not there, or that it doesn’t bother me.

I don’t know what else to say here. Usually I have strong feelings when I write, but recently I have been apathetic at best. actively avoiding tapping into feelings for fear of feeling them. that’s not going to hold out in the long-term. it feels like my brain is filled with the tv-snow… from back when that was a thing

[Enter Sanity Here]

Yeah… this is the text chain between me and a very supportive friend…

Pizza and Cupcakes

 

Seriously, god bless her… I am making no sense. taking no advice. barely “hearing” anything. also my stomach still feels like shit.

cherishing sensor free time…

pigs-fly.517.416.sI know that I’m not supposed to do this… but I just feel free. I took my dexcom off last night. and I felt like going to bed. I didn’t want to jarred awake two hours later, so I made sure my numbers were alright, and I went to bed with no sensor on, I feel free. I can soap up in the shower without worrying about bumping it and messing up the adhesive. My dog can jump in my lap and I don’t have to worry about where her paws are landing. I just feel better, natural, the way I’m supposed to be. I can’t convince my self to put it back on… I keep thinking “do I really have time right now? what will I be doing in two hours? will it work? no… I’ll do it later.” and it keeps getting pushed off. rebellious teenager or tired diabetic… maybe a bit of both. I have to replace my ominpod tonight too, so maybe I’ll just do them at the same time… you know what that means though… I could have total device free time… I told myself I wouldn’t do this… but I’m so excited… I know it will just be for a few minutes (as long as I behave), but I am so excited to be device free even if it’s for such a short time… I know it’s not a good idea. Lunch is hitting me right now, and I really wish I could just know where I’m at — I’m so used to having the dexcom. even though I hate my devices, they are so damn helpful. oh well… we’ll see what happens… maybe I’ll be responsible, I mean eventually pigs will fly, right?

Emotional Robot

bender

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.

I’ll be available today between 1-2 pm

detour-sign

I am definitely processing my OmniPod experience backwards, maybe because I was so overwhelmed that I wasn’t processing anything for awhile.

I had gone to my doctor and gotten the prescription for the insulin for the pump settings. I emailed the rep to confirm that she had received the settings from my doctor, figuring that I would have a few days, maybe a week to mentally prepare myself, I would watch a few videos, talk to my sponsor about it, make a plan to go to a meeting right before and/or after, and then…

“I am available today between 1-2 pm.  Can we meet then?” That is what the OmniPod rep replied to me… at 4:50am, which of course I didn’t read until 8:30am… which gave me a 4.5 hour window to “prepare myself.” Calling this a major detour would be an understatement. She apologized for the short notice, and said that she’s going to be away on vacation and wanted to set me up before she’s out of the office — I appreciate that. sort of.

…although, I had thought I’d have at least another week of denial…

I started this post before I left to meet her, but in the rush to wrap up work and get out of the house, I had even less time to prepare myself for the impending doom. okay, so I’m being a little dramatic… that’s how it felt.

In hindsight it was just as terrible as I thought it would be. I felt exposed in every way a person can feel exposed. I was on the brink of tears for half of the appointment. I wasn’t really listening to what she was saying, and worst of all, like every other dietitian appointment I have ever had, it was completely useless. I could have answered all those questions just from the literature that I had already read, add in some YouTube videos, and I’ve now more than doubled the useful information that was given in that appointment. If you do your reading your first appointment should be about 15 minutes, do the first insertion and then let me go home. And here’s the best part… I’m supposed to meet her again? For what purpose I asked, “to go over more information” she says… I’ll go because I’m committed to doing all the tactical tasks asked of me by my doctor/this disease, but I won’t like it.

I did not appreciate the bursting of my denial bubble. Especially not when it was with basically wasted time. Having now had time with the omnipod, emotionally I still hate it, tactically it’s working really well.

post-appointment vow of silence

I feel like this picture captures my inner monk -- part vow of silence, part gangster, lol -- Photo by Joel Collins

I feel like this picture captures my inner monk — part vow of silence, part gangster, lol — Photo by Joel Collins

after meeting with the rep I told know one. I saw two people I knew at the place I met the rep, so I was honest with them. I admitted to my parents and my friend I went to eat with that night, but that was it. and I was not going to tell anyone else. posting on this site was the next person I told. I don’t know why. I guess somehow it felt like if I kept it a secret then no one would ask me any questions and then I could pretend that it wasn’t there. I was embarrassed by it, more so than I was by giving shots — I guess because it was new again, or new to me…? I relaxed a bit and started being upfront when asked about diabetes, or about what was going on with me… since that is the thing that most occupies my thoughts these days.

I went to a friend’s birthday party last night and wouldn’t have felt comfortable in a bathing suit around any other group of people, it’s the first time anyone has seen me with both devices beyond a “yes, this is what it is.” I got a few questions, but they were inquisitive and supportive… “I prefer ironman or the bionic woman” being one of my answers. It was a great way to “rip the bandaid” on being open about this next step in my diabetic journey. Not that I need to tell everyone or be an omnipod poster child, but I have found that I feel better in life and in myself when I am open and honest in all aspects of my life. It might be awkward and painful now, but if I’m honest and address it for what it is now, the stress associated with it will diminish and the changes that I need to make become part of my life, quietly, without worry or difficulty. This is my experience with all other changes in my life. I feel rather zen while writing this, but it is true — when I can move into acceptance, or at least address why I am resistant or resentful, I immediately feel better — it is this honest that has helped me get to this point. now if I can keep that going… maybe I will be able to tell Diabetes to “shove it” from a place of honesty and acceptance.. hmmm, that doesn’t seem to totally fit… haha

Death / Diabetes

FAMILY_GUY_DEATH

Death: formerly known as diabetes

So this is pretty much how I feel about Diabetes today. I am angry. I started on the pump. I hate it. I had to do the “installation” by myself for the first time. I have never felt so alone. It hurt. It was scary. I don’t have many options for location because I don’t have enough body fat. You read that correctly, being healthy, and not fat, is working against me. This stupid disease, which is supposed to be helped by exercise is actually also hindered by it. So it then doesn’t help that I continue to lose weight. I am trying to eat properly, but I just don’t feel like eating as I was before. I used to snack all the time, I’m not feeling like protein and even with the pump, every meal feels like a challenge, it’s just easier to go without, unless I absolutely need it. A sprite here or there keeps me up and alive. I hate this. I resent the world. I am angry and so sad all at the same time. For the first time in ages I felt like tossing stuff across the room, or taking a lacrosse shaft or a baseball bat to anything within my immediate vicinity. Beat whatever that is to a pulp, until it is broken in pieces, rendered useless to whatever function or task it was made to fulfill. I wish I could take on Diabetes like that. Train hard and then fight to the death. At least then I would have a chance to fight, a hope and a strategy to beat Diabetes — and hopefully leave a few marks and before sending it limping away. I do not want live with this stupid fucking disease for the rest of my life. I am so angry, I’m sick of this stupid shit. I would much prefer a cage match with a worthy adversary, even a seasoned veteran, than living this disease. I want to beat the shit out of this stupid fucking disease. maybe I’ll get a punching bag with “Diabetes” on it. Or maybe I’ll just collapse in the fucking sad self pity that is my life my life at the moment.

I just feel so alone. I know that there is help within my reach, but I fight against it because I want to be able to do this myself. I see asking for help as a weakness. this is a flaw in my character. I want to be able to take care of myself. without the crutch of anyone. whether real or imagined. requested or forced upon me. I do not want to depend on anyone and I do not want anyone in my life to believe that I depend on them. although I know that I will not be happy surviving as an island, my instinct is still to try. I am so glad that I was diagnosed as an adult so that I have the option of being responsible for myself from the beginning. Not having to wean a parent away from the controls. I am a capable adult. I do not want to be treated as a child. It’s juvenile diabetes, it doesn’t turn me into a juvenile.

I want to be true and authentic. I want to appear as I am. represent my true self. this is what I am working towards. In my mind my true self does not include diabetes, but I guess I will have to adjust.  fuck everything. I should probably go to sleep now. I just had a whole mini sprite, so hopefully I’ll be high enough to make it through the night without my stupid dexcom waking me up. Rant over. or maybe just paused.

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