life with type 1 diabetes

Year: 2015 (Page 3 of 6)

hidden identities

When I came out, and then started dressing as I’m comfortable, it became very clear to the rest of the world (by their standards) just how gay I really am… which in case you’re still confused, is really really gay. However, when I was diagnosed with diabetes I just kind of looked like I had the flu, and then with my sugars under (relatively) better control, I went back to “looking normal” (whatever the fuck that means… another rant for another day). So here’s the problem with all that… I’m actually kind of sick, and more recently, really sick. I hate that word, you won’t really hear me use it, but in the dictionary definition, objective explanation of things, that’s what I am… my body doesn’t work right and it makes me feel like shit, lately it’s been doing that a lot, and if I don’t get this shit under control soon, it’s just going to spiral… I’m saying this “out loud” as much to the internet as I am to myself. Things are not okay. So I’ve come to a big decision… I’m going to head back east to spend that time with my family… so that I can get better… that’s right, I’m going to let my family help me. I never thought this day would come, I say this sarcastically, but also not really. I said in a previous night scout post that I would never let my parents see my numbers… well guess who is going to setup night scout on their devices for them… that would be me. I even heard myself agree when my mom suggested that they put a baby monitor in my room… I’m 27… and I’m so scared by my lows recently that I actually agreed to that. That should give you a little hint to where I’m at…

In many ways I’m grateful I can get away with passing as being well, it means I don’t have to discuss my health with everyone I meet, I don’t get the fake sympathy, or the weird looks that other illnesses can bring… but for me “passable” has also meant denial, lots of lots of denial

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

Find a penny pick it up

I should probably write about my progress with xDrip… which has been tough, but productive, or how I’m doing with diabetes, bad… but instead I want to talk to you about something wonderful… I’ve been finding pennies everywhere… I had a hunch that my grandfather had something to do with it (yes, I’m about to get all woo woo with this, if you’re not down go read something else)… just confirmed with my mom that I was not making stuff up in my memory, that Tuck (as we called my grandfather) did in fact collect coins from all his travels… I’m talking about spooky, ridiculous, frequent penny finding… I have a thought, I see a penny… holy shit, that thought has just been validated… maybe I’m nuts, but I have a lot of shit going on right now and whether or not I’m making this up in my head I don’t care because it’s helping me… so Tuck, if you’re listening, thanks — keep ’em coming, I need the support. I love you. that is all.

this is so f****g cool

Screen_Shot_2015-05-29_at_1_39_05_PM

So I had setup my night scout before, but I was using a dummy phone, only on wifi, last night I set up another phone that is on a plan… so all day today I’ve been able to see my numbers while I’m working… without moving or pulling anything out of my bag… I feel a bit off… swipe over to the open browser tab and see how I’m doing… or if I’m already working in the browser window I can just look at the tab name and see my number and my trajectory arrow…. I’m not sure if I can describe how freaking revolutionary this feels. I’m so glad I decided to build the night scout, even though I thought it was only really for parents with t1d kids… I was totally wrong. I love this. Seriously, I might cry… this is so f****g cool.

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!!!!!

waiting for the postman….

bonus cool points if you can remember Postman Pat's theme song...

bonus cool points if you can remember Postman Pat’s theme song…

So the xDrip progress has not met my millennial need for instant gratification… I’m sure I’ll power through the project itself, but the parts are not all “amazon-primable” so I’m waiting for the whole kit to be here, so I can get started. I took some time away this past weekend to get centered and focus on my health from the inside out — it was an amazing last minute decision. Rather than just going camping, I found this amazing yoga retreat, never mind the fact that I realized after signing up that I haven’t consistently done yoga in at least two years, and even then, maybe longer depending on what you count as a “consistent” practice… but it was amazing, I jumped in with two feet, accepting and being excited by vegan/vegetarian food, getting a massage, and letting my science mind accept the healing of reiki with out a scientifically defendible solution… and I feel ridicuoulsly amazing, so I guess that’s the only thing that matters. The thing that this weekend really proved to me is that I am stronger than I thought I was — and my ability to connect with people is not in my mind, when I am willing and choose to devote the energy I am capable of connecting with new people, seems like a blinding glimpse of the obvious, but there it is… love and light, and hope, xo

slipping, while stepping it up

I feel like I’m slipping, but only because I’m trying to ratchet up from a crawl to a run, well maybe from a walk to a brisk walk, but still… it leaves me with the options to slow down or push through, my answer my whole life would have been to push through, but then the last few years — getting sober, learning to ask for and accept help, diabetes (crash, boom!), — have taught me to slow down to meet present challenges, but now I’m starting to feel the itch… the “fuck it, just run” itch… and I’m more and more inclined to listen to that voice, it feels like I’m risking a relapse in every sense of the word, but I can’t help but also feel that staying still is keeping me sick… who the fuck knows, at the end of the day it’s my life… I’ll keep you posted.

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