Dear Diabetes, you suck.

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

Tag: Doctors

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…

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

Oh shit. Did I choose the right one?!

sharkOmnipod v. t-Slim v. MiniMed … who the fuck knows. Wait, what’s that other one again… t-slim? Fuck all of this. I’m not even sure if I should be on a pump. First a friend of a friend, who I barely know and barely knows me, questions my choice to go with the omnipod over the minimed… and then tells me that I should really take care of my teeth. yeah. that happened. and while I was at brunch, it was a weird day. Then all of a sudden my numbers go flat, not flat-ish, but “Do I really have Diabetes?” flat. That is a dangerous question. All of a sudden I’m not sure if I really need a pump, I have visions of just two shots a day, meals without a real care, just checking in to make sure that I’m still good — which of course I always would be… it’s just a dream. Whether or not I want to accept it, I have diabetes. I thought I had gotten through the denial phase. Oh fuck. now I’m going backwards. again. at something else. I digress… the point is that my numbers are flat, the spooky flat way I imagine the the ocean would look before jaws jumps out to eat me (#SharkWeek is coming!). And I couldn’t figure it out… I mean in theory it’s good, but really it’s just  spooky. I’ve been staying at around 120, seemingly no matter what I do — I eat and nothing happens. I keep waiting for something to happen, but then it doesn’t, and I’m weirdly disappointed and confused — not because I want my blood sugar to drop, but because I want it to make sense. As I typed that sentence, I heard my mistake — I can’t ever let myself think that this disease will ever make sense.

So I was weirded out enough to call my doctor — adjusted my basal insulin so I am only taking it in the am — which means I am down to 5 units of levemir per day, barely dosing with novolog for meals…this makes no sense. How can I have diabetes if I don’t need insulin, or at least need so little?

So I might know why… I have a confession to make… I’m still not eating, I mean I’m not starving myself, I am eating sometimes, but not normally, or enough by nutrition standards. I have been going through some personal shit lately and although I know that I have taken the right steps and am on the right path, it has been hard. really hard. way harder than I thought it was going to be. I made the right choice, so why does this hurt. Most of the time I’m fine, I did make the right choice, but the one thing that doesn’t seem to follow my rationalizing is my appetite, I’m just not hungry. I’m trying, I’m making myself, but I am just not hungry. I don’t feel like eating waffles. I love waffles. So maybe that’s why my blood sugar is stable… I don’t really feel like eating, so I’m not going to think too hard about that one.

So…in summary (because I have been so all over the place): I’m not sure I made the right choice with omnipod, I’m not sure I made the right choice about a pump period, my blood sugar is weirdly stable, but I’m not eating, so maybe that’s why my blood sugar is stable

Ominpod, you’re not even here yet and I maybe hate you

http://pumppeelz.com/

What my Omnipod could look like… with a peel from pumppeelz.com

I don’t so much hate the omnipod, so much as I hate the whole idea of a pump. yet another thing being attached to me (I already have a CGM), something putting insulin into my body without my active consent (i.e. an injection), having to depend on something else to live… another something else. a something else with a battery. something else that could fail me. something else that I will be dependent on. that I will have to trust. Fuck this.

When I got off of the phone with the doctor’s office, after finally conceding to starting on the pump, I was surprised to feel relieved, I knew I would feel scared and hesitant, and cautiously optimistic, but I did not expect to feel relieved. So here’s the dilemma, I hate it (the omnipod), but I’m also really ready for things to be better. I hate letting myself get hopeful, because then my hopes can be dashed, whatever it was I was counting on will fall through and I’ll be even worse off for having had hope in the first place… now putting that personal baggage to the side for a moment… will the omnipod make my life better? easier? am I delusional? is everyone lying to me? the support groups seem to be in favor of pumps in general, but then I have heard bad reviews too. Once you’ve decided on starting with a pump, it seems similar to buying a fridge — everyone has an opinion, but in the end they are pretty much all the same. The real question is — do I even want a fridge? what if I like my ice chest? is it really and ice chest or is it just an equal fridge-type thing that gets a bad rap for being less cool than a fridge when really it’s just the same… I think I’ve lost my point in the metaphor. I am not in love with the idea of the pump, however, it seems that my doctor is… or at least it is what she thinks will help me manage my diabetes best. If it has to be a pump, at least it doesn’t have any tubing, I think it helps that the omnipod will essentially feel like just a larger CGM, it’s not as startling to my reality this way. I know that there are other things that will be different, but at least the aspect of wearing something on my body isn’t totally new… I mean that’s something…

I don’t like things that I don’t know. Lack of knowledge prevents me from making fail proof plans around every aspect of something. I strongly dislike things without fail proof plans. It seems recently that nothing has a fail proof plans. I’m not happy with much lately. I’m scared of everything. I’m scared of getting the pump. I’m scared of not getting the pump. I just want to feel better. I want to feel better. I don’t want to have to worry about all the things I have learned to worry about. I don’t want to worry about the things that I don’t know enough about to worry about and what I’m going to figure out tomorrow that I will then wish I had known earlier and will then double worry about from then on. I just want to be okay and to not have to worry so much. and to not die. and maybe also to not have diabetes. if I’m just saying everything I want here and not sticking to possible and/or rational things. while I’m at it, could I ask for a working support system… one where both I am capable of asking for support and those I ask are capable of providing it — I don’t think that one is possible.

12 hours. Impossible.

Facebook-Thumbs-DownSo I went to my endo last week, turns out that I’m only 30% controlled, which is no where near the goal of 70%. Not only did she recommend the pump, but also instructed me to take my basal insulin 12 hrs apart rather than just at night and in the morning — which for me was usually 6-8 hours apart… So, setting aside the pump thing, because I’m still processing on that, I am trying (emphasis on trying) to take my basal insulin 12 hours apart. I am also convinced that this impossible. I get up around 6:30 to 8am on weekdays, going to bed around midnight, which means I either have to remember to take basal at lunch (nope) or take it at 8pm (nope)…which means I don’t really take it when I wake up or when I go to bed, which ends up with me not knowing when I should take it, when I last took it or even if I did take it… disaster. So much for the 12 hour split providing more control… I need to get those insulin pen cap timers … Well Diabetes, you have earned yourself yet another DISLIKE. Also, Fuck you.

Dear Diabetes, You want me to put what? where?!

So, I had a doctor’s appointment today — this is the one I had to run around and get all this blood work done for and reschedule 3 times and I finally went in and it’s like nothing mattered except for my last 3 days of numbers… incredibly deflating. And now she (the doctor) wants me to go onto a continuous glucose monitor (CGM)… it makes sense, I get it from a logical standpoint — from 421 to 71 (mg/dL) in less than two hours is no joke, but I am still having a hard time with accepting that there will be something attached to me (ick). Something attached to me all the time… it’s just a weird concept… I’m not sure why I find it so much weirder than wearing the same necklace or earrings everyday, which I do all the time, but for some reason it feels like it will be different. This will be something that I will depend on… okay, that part is getting easier, because there is no way I’m ever going to be able to be an island, fully self-reliant, as I always dreamed… it’s time for reality… I will always be dependent upon insulin, and testing, and by proxy, other people, whether they are doctors, friends, or support. At least the CGM she’s recommending doesn’t have any wires… it will sort of be just like having another phone… one that tells me the pattern of my blood sugar, that will be helpful. It’s still weird though… I reached out to my sister for some support as I was leaving the doctor’s office… and this is what she said…

photo

I love my sister. Here’s to finding a CGM that can also make me fly… haha

Facing the truth.

Truth: I have not been taking care of my diabetes to the best of my ability

Truth: I know better and am capable of better

Truth: the only reason I’m admitting/facing this right now is because I have to go to the doctor next week

Truth: I’m cutting myself more slack than I deserve, I’m still new at this, but that does not cover actively choosing to eat anything I want rather than following guidelines of any sort

Truth: On my way home last night, I didn’t stop at 7-11 and buy myself that giant chocolate bar I wanted. #GoMe

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