Dear Diabetes, you suck.

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

Tag: Hope (page 1 of 4)

Best Explanation/Summary of Type 1

This is by far the best, simple concise explanation of type 1 I have found… thank you @HelmsleyT1D

Type 1 diabetes (T1D) is a life-altering autoimmune disease that afflicts nearly two million people in the U.S. alone. There currently is no cure and the number of annual diagnoses is on the rise. It is perhaps the only disease in which patients are required to monitor their condition constantly and make their own dosing decisions with a drug that, if improperly administered, can kill them. It is a dangerous and relentless 24/7 grind, and research shows that the vast number of people with T1D are failing to properly and safely manage their disease.

With T1D, the body attacks its own insulin-producing cells in the pancreas. Insulin is a hormone that enables the body to metabolize and use glucose. Elevated glucose levels can be immediately life-threatening in severe cases, but more commonly they can result in a range of serious long-term health complications, including blindness, amputations, heart disease and kidney disease. T1D is managed today by a rigorous regimen of monitoring glucose levels – either by pricking one’s skin multiple times per day or wearing a subcutaneous continuous glucose monitor – and then administering insulin via injection or an insulin pump. None of this process is automated currently, which means end users (or their caregivers) must play the role of a pancreas.

 

A shitty doctor’s appointment… as expected

my numbers have been shit, I know this, also I was traveling which rained crap all over my routine… nevertheless I am determined to keep the travel in my routine, so I’m adjusting my diabetes around my life and not the other way around. That being said… my numbers really were shit and I did really say “fuck it” a couple times… I mean I was 300+ or under 70 pretty much the whole time I was in NYC, in Denver I mistook a sugar drop as altitude adjustment and very nearly passed out (40)… there were some learning opportunities… on the whole it was an amazing trip, a testament to the fact that I can be away if and when I need to be… that it’s okay to ask for help, and there are creative solutions for when living on my own is sub-optimal, other than hiring a nanny for myself… go me! But really my numbers are shit, so I’m getting back on that now… back to paleo light… and “remember to eat” alarms, if that’s what it takes, then there it is… today is a positive day, there was a lot of swearing about this yesterday, my lap time to sanity is getting shorter — big improvement, xo

and the science project continues…

DualBloodSugarOverTime

Creating dashboards to answer questions — my question is how am I doing now, as opposed to then? and I want to be able to change both of those time frames… comparing this week to last year, this week to last week, this month to last month, to the last three months… and so I created this dashboard. Above is just an image, I’ve started using a bit more technical solutions, so I’m going to be posting image files for a bit until I get a better process in place to use the publicly available/postable versions again.

[Data Dork Stuff] I figured out that the export file I was creating was cutting off at 65,536… does that number ring a bell? Yup, that’s right — the export file was .xls and not .xlsx — I can’t believe that I missed that #dorkfail — so this explained why my data was cutting off in December, in order to resolve this issue I had to export the data from the data blending tool into a Tableau Extract rather than and Excel file, since .xlsx isn’t an export option (#softwarefail #upgraderequest). Building visualizations from a Tableau extract requires using Tableau Desktop, rather than Tableau Public — like I said, I’m working on finding a way back onto public with this data, so that the dynamic versions can be shared here… and elsewhere without the need to use the desktop software. [Other tools] Looking at bringing together data from my OmniPod and my Dexcom — I used Diasense to get a sense (womp womp) for what I’m bringing together. I love their idea, and the tool — but I hate the interface. Okay, hate is a strong word (and I did just say I love the tool <3), but I love data, and I know that it can be displayed in a way that not only looks better, but is more conducive to helping diabetics understand their own bodies and support actionable decisions in their/my daily life. Next Steps… OmniPod data…

In other news, I’m really struggling staying on a diabetic diet — I eat breakfast, I snack smart, I get all the way to the evening and then I get a case of the fuck-its, except while still hearing reason in my head… it’s maddening. Hoping look at all this data will help me see what I need to see clearly… and help me to make the right decisions, or at least the right next step.

glucose monitoring temporary tattoos for all!

A temporary tattoo that would replace finger sticks… Yes. Just Yes. Check this out!

GlucoseTattoo_2

 

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

 

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

my reality

I had a surreal feeling this morning, walking through my apt — I heard the tick of my insulin pump, and for the first time I can remember I had no feelings about it. I noticed the sound, registered it and then kept going. It was a few minutes later that I realized what had happened. that diabetes had become a passive part of my life. my life is my cover photo. in the midst of the rest of my life, regardless as to how I feel about it, there is the constant of diabetes.

A win at something lame is still a win.

GoldStarSo I hate having to wear a pump. I hate the process of putting on a new one, but the other day I managed to put on a new omnipod by myself without having an emotional meltdown. This is a delayed reaction, but I am proud of myself. I was supposed to go to my friend’s house so I’d have support , but as I was waiting to leave, I thought to myself “this is stupid, I should just do it now so I don’t have to worry about it later…” and so I did it. fairly quickly, but still slower than I know I’ll be soon enough… I just keep thinking how slow and timid I was with the dexcom at first. I remembered to pinch the skin around the site, it didn’t hurt nearly as much as the first time. I even tried a new site, I have it on my upper arm right now — I think it helps that I have more fat there, but I’ve also caught it on door frames a few times… who knew I cut my corners so hard. Another thing down. I can’t help but hold my breath a little bit — every time I think I’ve got something down, a whole new pile of shit lands in my lap. I just don’t think I can take on any more.

no pants, no tubing…no problems

a diabetic twist on a Kenny Chesney classic

a diabetic twist on a Kenny Chesney classic

okay, so maybe some problems. but I hate wearing pants and omnipod works with that. I’ve been working from home a lot lately, and I’ve found that I really enjoy not wearing pants all day. it makes me happy. this is only possible because I have no tubing. I suppose I could tuck a tubed pump in my bra, or clip it to my underwear, but I love not having to think about that. I hate sleeping on it, or not being able to sleep one way or another because the omnipod makes it uncomfortable, but at least I don’t have to worry about kinked tubing. last night I suspended my insulin based on my own judgement for the first time. I felt like I was in control. and it worked I woke up in the 90s. I’m still yo-yo-ing a bit, but I can feel the better numbers just out of reach, but getting closer.

Every 42 days

Date tearI did the math. if I replace my omnipods every 3 days, and my dexcoms every ~14 days, I will have a small window of time to be device free once every 42 days. In reality it will probably never line up perfectly, but my first pod change was one of those nights.

My omnipod was the first to go. After it hits the 8 hour mark it goes off with a loud piercing noise that sounds like a fire alarm designed for dogs… so that was lovely/not. But, at least I used the tac away the omnipod rep gave me, sooo much better than just ripping it off, I will be using that from now on. Pitched the omnipod in the trash. Then I decided that I might as well change the dexcom out at the same time. Off came the dexcom. I was free.

I sat for probably close to an hour… what felt like an eternity… just sitting in my desk chair with no devices on, pondering what life would be like without them. remembering what life was like without them. mourning my loss of whatever that is. netflix in the background playing my latest binge series, diabetes paraphernalia strewn across my desk like a half done arts and crafts project.  knowing that I wasn’t receiving an insulin, and that this much time without any would probably fuck up my overnight numbers… which it did, or the chocolate I stress-ate. Around 10:30 or so I realized that I would have to stay up for the dexcom to prime, or be woken up by that super annoying beeping — so all this needed to be done for the sake of sleep, or at least that’s what I told myself in order to bolster my resolve. I put together the needle to fill the omnipod with insulin, by far the most “medical” feeling part of the process, I was able to follow the instructions on my PDM and got the two beeps telling me I had filled to the minimum insulin requirement, all I need at this point. Pressing the button to prime, I zoned out again for a bit. To this point I had been holding my shit together. It was done priming, it was time to take the backing off the adhesive and stick that intrusive declaration of sickness on my body. I lost it. I threw a full scale tantrum, to myself, complete with crying, pacing and the desire to beat the shit out of things… thank god I keep my lacrosse sticks in the garage, otherwise I might be looking into patching drywall… after a bit I was able to compose myself. The adult part of my brain rationalized that I just need to do this. I peeled the backing and, with a bit of contortion, was able to apply it on my back where I thought it would be least bothersome… then the PDM wants me to push a button to allow/direct the pod to insert the canula… a nice way to say that a mechanical device is going to jab me with a needle — I don’t care what fraction of a second it is, the fucked up part is pushing the button. I pressed the button, I waited… and oh fuck, that hurt like a bitch. that did not at all feel like my dexcom. they lie. it doesn’t help that I don’t have “enough” fat — I learned later that pinching the skin around the pod would have helped… too late for this time around. the stabbing of the canula… yes, that’s what it felt like to me, set me off back to the tantrum. Every single “why me?” “this blows.” “this isn’t fair.” “fuck this.” “I quit.” “this can’t be real.” “why does this have to be my reality.” “what did I do to deserve this?” “can I find my way out of this?” “there has got to be another solution.” — even the passing thought of ending everything hasn’t occurred to me in a long time, but in that moment anything sounded better than being in my own skin. dealing with my own reality. and then just like it came on, I was just done. shook up, but done.

I sat down again, the thought occurred to me that I probably should have done the dexcom first b/c of its set-up time, but whatever, too late for that. I took care of the dexcom installation swiftly, at this point it’s not a big deal… as I type this, I hope and know that eventually the dexcom installation will be like that too. And just like that I was done… ready to find two hours of entertainment to wait out the priming of the dexcom. back to my new reality. Me with two devices and a puppy on the couch.

With just the dexcom I could/did take a bit of time in between wearing the sensors — it sometimes resulted in disastrous lows, but it was still possible. It is not possible for me to take time off of the omnipod… I mean, I can take it off my body, but I have no long-acting insulin in my body anymore, so I would immediately be on my own… with a busted pancreas.

So basically, every 42 days I will be teased with the idea of freedom — I think I’ll just re-up my dexcom and avoid it altogether… no sense in temptation for the sake of temptation. Who am I kidding… I’ll probably do it anyway, 10 minutes of freedom is better than none at all.

Older posts
%d bloggers like this: