Dear Diabetes, you suck.

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

Month: May 2014

Dear Diabetes, you’re the only one who thinks my jokes are funny

(This started as a text to a friend who is also a sober diabetic, but then I decided against reaching out #bigsurprise)
You know those jokes that people make in a room full of alcoholics, that sober people wouldn’t think were funny… I feel like there are things I can’t say because only diabetes would understand. For example, right now I’m playing that stupid game where I know that I’m low, but I don’t feel like fixing it, so I’m just sitting here with a sprite next to me, refusing to drink it, even though I just tested and I know I should drink it, and I know I should send this, but I won’t — and I just tested again so I tell myself that I’m fine even though I’m really not, I’m just less not fine (I’m avoiding putting numbers in this post because I don’t want to admit how stupid I am/how bad my choices are/were). And another test and even less not fine, almost regular fine*. boom. I was right. I am fine. This does not bode well for me taking care of myself next time. I’ve already started putting the meter under my pillow when it beeps for a low in the night, like an unwanted alarm clock. What happens next time? Do I make it? If I nap, will I wake up again? If I don’t, who will take Casey? Nvm, that’s a stupid question, of course my dad would take her. You thought I was ready to grow up and take proper care of myself..? Jokes on you, I prefer to act like an adolescent and refuse to do anything, even if it is in my best interest.

*the “fine” that you say to other people when you’re not fine, but you just want them to go away

[I did eventually come back up to a normal level, but not because I ate anything, I’m not sure why, it’s a mystery]

Dear Diabetes, Why do you hate food?

Sitting at my desk. Hungry. Today I’ve had a yogurt, a small sprite (blood sugar), and a packet of powdered doughnuts (sort of blood sugar) — that totals 550 calories. It also makes me that girl that tells you what she’s eaten today. If my blood sugar is at an okay level, do I need to eat? The answer is not yes or no, but another question — are you hungry? Do you need to eat calories? At 4pm today I was uncontrollably falling asleep, even though my blood sugar was fine… I was confused, there was an errant thought that maybe I haven’t eaten enough today, but I am convinced that that’s not it. I am hungry, but my blood sugar is okay, so I won’t eat anything. I’ll wait until my sugar is low enough that I have to emergency eat and then my sugar will spike up and again I won’t want to eat anything, because then I’ll have to give insulin and what if I give the wrong amount and then I crash, or if I don’t give enough and I go too high… the easy option is just not to eat anything unless absolutely necessary. My logical brain knows that this is the wrong choice, an unhealthy choice, but I’m scared and sad and mad and I have a headache. I feel like an idiot. Of course I don’t feel well… I haven’t provided my body with the calories it needs to function (enter excuses: but I’m at a fine/a little over weight or I ate yesterday, I should be okay). Again, my rational brain knows that this is not right, but I do nothing about it. I’ve been thinking about going to get something to eat for the last two hours, while my headache gets worse and I just sit here, whining about it to the internet. Everything I think of isn’t nutritious or wouldn’t be diabetic friendly. I’m so overwhelmed. Part of me doesn’t want to address this, but I know my current path/behavior is not sustainable. I hate change. my head hurts. I’m tired. my throat is dry and I’m stuffy and phlemy from allergies. I’m probably (definitely) dehydrated. Fuck Diabetes. I should probably get something to eat.

Apparently, a person needs about 2000 calories per day… so I’m roughly 1500 off the mark… Chipotle it is… now to convince myself to leave the house…

[Update: It took me another 2 hours to go get food… but I made it out of the house and ate. #GoTeamSophie #smallvictories]

Dear Diabetes – Notes from Mt. Feelings

Over memorial day weekend, I went to A-Camp, which is a retreat for queer women put on by Autostraddle, in the San Bernardino Mountains, affectionally called Mt. Feelings, and it was wonderful… it was also at 7,500 ft. Enter Diabetes. (also, Fuck you Diabetes) The first morning, I carefully ate a familiar breakfast, took the regular amount of insulin for the meal, along with my basal insulin and went on my way… 30 minutes later I was at 400. I was so high that my CGM didn’t show a number, just “HIGH.” Needless to say this freaked me out. It didn’t help that the nurse on staff (who was really nice and well intentioned) suggested that I carry around my glucagon every where I went, like a five-year-old (this is how I took it). I declined that suggestion. Basically, I arrived at camp and then Diabetes decided to fuck me over. I will probably write about this again, but for now I just want to share my feelings that I had the day I hit 400… it was a rough day. *some of this journal entry has been redacted to be polite to friends Evernote Snapshot 20140529 130812 Evernote Snapshot 20140529 130852Evernote Snapshot 20140529 131221 2.33.55 PM Evernote Snapshot 20140529 131221 - Version 2 **this entry is post-dated to reflect the day I wrote the entry in my journal

Nothing new.

downloadHey there Diabetes,

Today I really don’t have anything interesting to say, just a pretty standard “You suck.” Because you are in fact terrible. You are a disease that isn’t going away. You can’t be conquered or fixed (I am not willing to open the door for Hope — for something that may never come). Every time I think I may have at least found a way to sometimes peacefully co-exist with you for some length of time, you just laugh at me and find another aspect of my life to fuck with. Like I said, nothing to interesting to say, just a polite “Fuck you — please leave.”

I say this knowing that you will never leave. Even if by some miracle there is a device or a cure that relieves the physical symptoms (and I said I wouldn’t open the door for Hope… there goes that), I will forever be an emotional diabetic… my blood sugar and what it affects, will forever be a part of my thinking… I will never fully trust my body or any device to monitor/stabilize/control my blood sugar ever again.

Diabetes is never far from my thoughts — Do this. Am I low? Finish that. where’s my CGM? Feed the dog. Blood Sugar. Call home. I need to eat something, or I’m going to crash…. this is my inner monologue, this is my life. I say that and then I question it — and then I realize that that statement is never going to turn back into a question. “This is my life?” is no longer, “This is my life.” is here to stay.

Fuck you diabetes, fuck you. And even though I know you won’t, please just fucking leave.

Respectfully,

Sophie

Diabetes… what are the parameters?

TalkData_blog

I am a data geek… there is nothing I love more than a good spreadsheet, except for maybe if that spreadsheet has a carefully crafted master dashboard, that dynamically updates based on new entries… (yes….. soooo coool)… anyway, I digress…

Why is my love of data relevant you ask? … ever since I was diagnosed, I’ve been looking for data to help me understand this disease — who gets this disease? when? how many people are like me and diagnosed as an adult? where can I find them? do they know why people develop diabetes at one age versus the other? what are the different methods people use to control it? As a parent? as the diabetic? is there an average A1c? how do diabetics in the US stack up against other countries? how is care different in different places? is it because of availability? insurance? cost? is there a gold standard of care internationally? I want all of these numbers and then I want to put them in tables and charts and I want to understand. And maybe help others understand. What are the rules? What are the parameters? Come on diabetes!! At least show me the odds? What do I need to look out for? What are things that I need to know? What should I be planning for? what is inevitable and what can I avoid? if I can avoid something how do I do it? what will it cost? is it money? time? lifestyle change? Once I know all of these things, once I have the data, I can form a plan — an optimization, if you will, of how I need to run my life… I am good at this, give me the parameters and I will find the best way… but I need to know what the rules of this game are…

A while back I posted an infographic on type 1 diabetes, this is the type of information that I am looking for, except more… I need to know more. I don’t just want the sanitized statistics, I want the data… this desire has been top of mind again recently because I have again noticed divisions in the diabetic community, not bad divisions, just differences… first you have the division between type 1 and type 2… I could dive into the medical differences here, but they are literally called different types #obivousdifference. Then you get into the subtleties — as a type 1 when were you diagnosed? as a kid? as a teenager? in college? under 30? over 30? Add on — how are you treating your diabetes? Injections? Pump? CGM? A combination there of? Add on — where do you live? what care is available? And additionally important — what type of lifestyle do you have? Are you active? Do you have a family? Do you have a support system? Are you single or married? What kind of job do you have? Do you cook? Do you like to cook? What things do you want to do that you will have to adjust because of diabetes? what else do you have going on that makes you unique? Other diseases and/or medical conditions? Specific beliefs? Hair color? astrological sign? Seriously, is feels that deep sometimes… like I am looking for the one other person in the whole fucking world who is like me and #jokesonme I’m the only one.

I want to know how many people are like me… type 1, diagnosed as an adult in my twenties, active, or striving to be, with a support system of friends and sort of relationship that is borderline co-dependent in the best way possible, with a three-legged dog, who is also sober and bipolar (me, not the dog) … okay, so I recognize that I may be the only one in my specific situation, but in the broadest sense I am looking for other type 1 diabetics who were diagnosed as adults, while living on their own/being responsible for themselves… there have to be more people out there. Everyone my age that I talk to was diagnosed as a kid, and from what I can tell, it’s totally different, they are already adjusted, fine, yeah, maybe they are still mad and resentful about it occasionally, but they have years of experience under their belt at this point. I’m still new at everything, I don’t have parents to sit in on doctor’s appointments and help me to “get it right” — it’s just me and the dexcom video… youtube is not a support system substitute. Although, that’s not to say that I’m not glad sometimes that my parents are not involved, and that I get to make all my decisions, for better or worse, on my own. At this point, it’s not a question of better or worse, my situation is what it is and I am looking for others that share this experience, not just ones who have walked through it and are on the other side, but ones who are walking through it now, who can share my journey and so I can share theirs too. I have looked for support groups, but they are all general and the synopsizes are usually geared towards parents… I have no interest in sitting in a room full of parents trying to figure out how to control a disease that they cannot feel… I have no ill will for them, and I recognize that their journey must be tough, in a different way than mine, but tough all the same, but I need to find others who are walking my journey. I need to find those people. I wrote a while back that I felt I had found my people, and I did to certain extent, but that was when I was just looking for type 1 diabetics, now that I have progressed in my diabetic education, I am looking for the next layer — the people within my people, who have walked, or are walking a journey closer to mine than just insulin dependence.

This has been a long post… I’m not sure if it makes any sense, or if any part of it will make sense to anyone. This is how I feel. This is what I’m looking for. This is where I am.

Food Anxiety…what’s next diabetes?

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I’ve given a lot of thought to food over the last 7 months… it’ll be exactly 7 months since my diagnosis on Sunday… anyway, back to food, as I write this it is well past lunch time, I had only a yogurt for breakfast and I am yet to eat lunch, but my numbers are good, so I don’t want to eat and then throw them off… my body knows I’m hungry, I’m even feeling a bit light headed, but I just can’t bring myself to eat (and mess with my sugars). I’ve been able to be productive today, no fogging out through highs, no shaking through lows… but the trade-off is that I haven’t really eaten either… right now, that seems like a fair trade.

Noticing this trend in my behavior, I became curious if tight food control could become negative… well, it took about 0.4 seconds to think of a very negative possibility (see google search above). Most of the material seemed to be around “diabulimia” and the use of insulin restriction, and indicated that the disease would be used to mask the disorder. In my case, my questioning was more around a disorder developing in an attempt to control the disease. Clearly, I am by no means an expert on any of this, but what I do know is that not eating for any reason is not good for me. I also know, that I am mentally inclined to try to control everything. This is another situation in which I need to stay vigilant and aware of my feelings and actions — this time around food and insulin, in order to stay physically and mentally healthy. Great. Something else to think about. 

—————-

So I let myself coast into the 60s because I didn’t want to eat anything to make myself go to high (and then get all fogged out), so instead I got really low and slow, and stopped making sense… fantastic alternative. Good job Sophie. Now what?! Sooooo mad. I’m mad at myself. I’m mad at Diabetes. I’m mad that other people care about me enough to be frustrated with me for not taking care of myself. I’m so mad at everything. I feel so disconnected, I’m typing these words, and I am angry, but my hands and brain are moving with apathy, almost as if I could just pause and take a nap at any moment. Slowly coming out of the daze that is a low… slowly… maybe a few more minutes of internet trolling until my brain is able to fully click into place… or maybe I’ll just take a nap…

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