Dear Diabetes, you suck.

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

Tag: Type 1 (page 1 of 11)

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…

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.

 

little wins

today I setup the wifi-only samsung galaxy I used to test the NightScout system so that I can stay connected to the NightScout server while charging the samsung galaxy that’s on a data plan… meaning that I can stay on the NightScout monitoring system all the time… that’s right people, I am actually trying to stay on something that might help me… and god help me, I’ve agreed to setup my parents so that they can see my numbers too… just in case… wooo sahhhhhh

Performance Anxiety? Or something more?

I was so excited when the last of my xDrip build kit arrived, I ripped open the box… and then the box sat there. next to my couch. for over a week. Am I nervous I won’t be able to build the xDrip? Sort of, but there’s more. Continuing the theme of resentment, I just don’t want to need anything to stay alive. I want to be able to be a cave man and live in the woods and eat squirrels… okay, so I said “want to be able to” not “want to,” but seriously, it freaks me out that if all infrastructure went to shit that I couldn’t survive in the wild… I would die, I’m who Darwin decided wouldn’t get to come along with the rest of the class. Fuck Diabetes. I guess I’m back to being angry again… so much for bargaining. Sometimes the grief process feels more like a merry-go-round than anything else… except I’m yet to figure out how to get off. I’m so tired of being diabetic. even just typing that, I thought to myself, “am I really?” — and then that logical side of my brain says “really?! did you just think that?! are you an idiot?” I wish this would just go away. Thinking about all of this hurts. I found My Diabetes Secret () yesterday… an anonymous Tumblr for diabetes feelings… talk about a baseball bat to the stomach, the idea is amazing, what I felt when I really let myself feel instead of managing symptoms or explaining myself to others, was not amazing. It was horrible. I had no idea I was still so upset, and scared, and mad, and all of the feelings. which brings me back to the box next to my couch… I can build the xDrip, I can choose to not build the xDrip, I will still have diabetes. I might as well have fun… here goes nothing… keep your fingers crossed for me…

Did you catch it?

So I post this last night — I had been delaying going to bed because I had been dropping (and because I’m a procrastinator and am terrible at going to bed on time) and I finally evened out… I was so grateful to be able to go to sleep not dreading being woken up, or not waking up… but that’s a whole other post… this is about what I realized after I posted the picture… do you see it?

What's missing from this picture? Hint: It's not Waldo

What’s missing from this picture? Hint: It’s not Waldo

Did you guess? There are no alert lines… no high alarm, but worse there’s no low alarm… and I’m going to admit this here… I haven’t turned on either of them yet, even though I realized this last night (before I went to sleep?!)… I can objectively see how absolutely ridiculous this is (just in case you were wondering). So I’m wearing this device, that will save my life and wake me up… and I’ve turned off the alarms… I mean, my dog is good, but she’s not 100%… and this is not shit to mess with… so why I ask myself, if I’m already scared of dying alone in my apt, do I then turn off the thing that is supposed to be there to guard against that very fear? The short answer, I have no fucking idea. The long answer, I resent diabetes. I resent every single micro aspect of it in any and all parts of my life… and at the moment it is manifesting in a not so good way. I’m resolving right now to turn on the alarm… just the low one… and only at 75… bargaining… which stage of loss is that?

the kit is here! time to get building!!

TonyStarkeWorkstation

I AM SO EXCITED. the kit has arrived… time to build a workstation and get this project going!!! I still have not idea if I can still solder or if it’s going to be a total disaster… TBD. Seriously, I am using putting my xDrip building station as bait for getting the rest of my work-work done today… ahhhh! SO. EXCITED. CAN’T HOLD IT IN!!!! Project time!!!!!

so this might seem like rocket science…

Screen Shot 2015-05-07 at 5.31.25 PM

so the other day I spiked right after breakfast, I had just been to the doctor and I thought “what the hell, I thought the adjustments were supposed to fix this…” pause and rewind for a hot minute… I failed to take into consideration that the previous night at 1am my OmniPod had expired-expired (meaning passed the additional 8 hours it gives you to change it)… did I get up to change it? no. did I think ahead and change it before I went to bed? no. I thought about it and then I was already warm and comfortable and didn’t want to strip down to have to apply/remove pods, I just wanted to go to bed… so first I get woken up with a low alarm, which I ignore, then I get woken up with the pod alarm (which is way worse than the dexcom… ear piercingly loud), only to silence it and go back to sleep, to be woken up and then ignore the dexcom at least once more… so basically, all this technology I wear does not stand up to an idiot who refuses to use it properly… and when I spike after breakfast… maybe it has to do with me not having insulin in my system for the previous 7 hours… just maybe, you know? who knows? that doesn’t sound reasonable? or like science (#sarcasm)… so the answer is… not rocket science… change my pods on time, listen to my dexcom, and only expect good results if I’m putting in good effort… new page, new day, new chance to get it right… one minute, one moment at a time

Preparing for your Night Scout Build – Extra Help

I had a great time building my Night Scout, but I was really nervous about having the right parts to complete the build. The directions for building the Night Scout are incredibly detailed and amazing, that being said, sometimes I need a little extra help — here are some extra pictures and detail to help you prepare before starting your Night Scout build.  I have explained my decisions, but if you want the a + b directions they are in blue bold text through out this post.

First to clarify, I am building the least complicated model — just the Dexcom reciever to an android phone, not including the pebble or any other additional device (I plan to add/upgrade later).

Physical Components: 

The 4 things you need: Dexcom G4 Receiver, USB to mini USB cable (same as the cable used to charge your Dexcom), Smartphone supporting USB OTC and an OTC cable

1) Your Dexcom G4 Receiver and the USB to mini USB cable used to charge your Dexcom (any USB to USB mini cable can be used)

2) Smartphone supporting USB OTC — I could attempt to explain, or link to explanations, of OTC technology and how to tell if a phone is going to work, but our reality is that we just want this to work… with that in mind, I highly suggest just buying a phone that has been validated rather than going through your build and being frustrated by it not working. The Night Scout Build Page give a full list of phones that work with carrier details and a list of phones that have not worked. Here is a consolidated list of devices that I used to determine which phone to buy.

From looking at this list, and reading other people’s build stories, I would recommend picking up a version of the Samsung Galaxy (Other than the Mini or the Core Prime, see my simplified list of OTC phones)  — that being said, for cost purposes, since the phone does not need to work as a phone, only as a data transfer device, picking up any proven phone model from eBay or a certified pre-owed from your current cell phone carrier is a totally valid option. I fully tested my rig with an eBay purchased Samsung Galaxy 3 on wifi only, before investing in adding an additional phone to my wireless plan (enabling my Night Scout to work when wifi is not available).

The phone must be running Android v 4.x for the Night Scout app to work. If you are also interested in building the xDrip device the device will need to be on Android v 4.3 in order to support BLE.

3) OTC Cable(s) – again, here I could explain/link to explanations, but rather than all that — this is the OTC cable I purchased, I prefer the “L” shaped end of the cable to help minimize the chances of the cables being knocked loose. The linked cable is a two pack, as with any other technology, I would recommend at least two cables for replacement purposes, but also for testing, to ensure your rig is working (see other Night Scout documentation for more information on cables, replacements/reliability).

My current rig consists of a Samsung Galaxy 3 purchased on eBay, previously used on Verizon, the above linked OTC cable,  my Dexcom G4 receiver and a USB to USB mini cable as pictured below.

Once you have the components — I suggest that you verify your version of the Android operating system before starting with the build. 

Now you are ready to build your Night Scout device! Start here!

Simplified Night Scout Phone List

Below is the summarized list of phones that I used to make my decision when building my Night Scout Device*

Night Scout Phone List

 

*It should be noted I compiled this list based on available Night Scout information, after first failing using another phone. Additionally, this list does not include carrier information, some phones have only been tested on specific carriers, for my purposes I assumed that the technology was based on the device and would be compatible with a wifi only build, and then later with a build on a major carrier — this is not necessarily true, it was my assumption that has held so far for my builds.

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