October 4th 2013… this date will forever be burned into my memory. On the phone with my sister, pacing outside of the urgent care I had gone to on my lunch break to “just get a Z pack” because there was no service in the building… with my phone dying, in a tank-top, shorts, and flip flops in a freezing building, being told that I needed to go to the hospital. I hesitated when my sister asked if I wanted her to come down to be with me… the hesitation was all she needed, she didn’t wait for me to answer, stopped only long enough to ask me to text her the address. I will never forget that day, my sister an amazing human, who made me feel loved and safe, and somehow less hostile about accepting help. I don’t really feel up to rehashing my whole Dx story, but I didn’t want to let this milestone go by without some sort of processing around it — I spent the actual anniversary with my sister, it was an amazing, simple, regular day — as regular as any day with diabetes… as regular as any day is for me.

Step 1. Hold Pants

*no joke, this is actually a thing on the internet, check it out

This might be an odd way of explaining this, but diabetes has fundamentally changed the way I get dressed and undressed every single day. I realized this when I went to change pants and I realized that instead of just pulling my pants off one leg at a time I used both hands to lift the waistband equally over my quads… weird right? nope. if you had something taped to the front of one of your legs all the time you wouldn’t want to randomly rip it off either. This might not seem like a big deal, but it’s different, diabetes has changed my behavior in a fundamental way that does not directly have to do with eating or working out or doctors appointments or anything that diabetes officially “touches.” I even found myself worrying lately that my pods were going to leave permanaent wear marks in my jeans/slacks like the least cool version of a skoal ring (dip is bad for you don’t do it). So now not only diabetes is ruining everything else, changing my pants-putting-on-techniques, but it is actually ruining my pants themselves. Seriously?! What kind of fucking disease ruins pants (*technically it would be the pods, and I later assessed that the stretching wasn’t as bad as I had initially thought… #t1dDrama)… but seriously, actual pants are clearly out of the reach/perview of diabetes… it’s a disease, these are pants. Spoiler, and this seriously just popped into my head… diabetes touches everything, even the things you think are totally unrelated, random, or sacred, repeitive, or one-off, every single part of my life is affected by this day-to-day bullshit. Even fucking pants. fuck that.

my t1d dop kit that goes everywhere… and the coffee that often accompanies it, haha

it’s a bit glitchy, it doesn’t work all the time, but for the most part the Dexcom Share app with the Apple Watch app have been an incredible combination for me. My Apple Watch arrived just before going away for a week, I was in the woods, so the NightScout option would not work well without cell reception, a perfect time to test drive the Apple Watch… there’s no learning curve, right? WRONG. Huge learning curve. I could do literally nothing other than check my blood sugar for the first week, but hey, that’s what I bought it for anyway… I asked myself before I bought it “Do I really need this? Is this really going to be so different than looking at the receiver?” but ever the tech geek, I used diabetes as a solid reason to buy the Apple Watch… it was an amazing choice. worth every penny. As with all type 1 diabetics, with me all the time is at least a BG meter, test strips, and a lancing device… in addition I usually have in my standard kit… my Dexcom reciever, fast-acting glucose, insulin vial, extra batteries, lancets, an extra OmniPod pod, and paperclip (OmniPod screetching stopper) (the kit also has a Tile in it in case I lose it) … not kidding, that shit comes with me everywhere, and by some standards that’s a “light” kit… if I were a diabetic parent rather than the diabetic I might carry more too (not sure what that says). Anyway, all of that fits into a small-ish REI dop kit bag… that comes with me EVERYWHERE. Most of the time this is fine, it’s in my briefcase or backpack and no one is any the wiser, but sometimes I’m just carrying the kit — social/happy hour type events where I just want to socialize and no one else needs “stuff” sometimes it’s awkward to have to carry my diabetic kit with me the whole time… the Apple Watch solved this. I was able to put my kit down on one side of a room and see my blood sugar without having to go back to check the reciver in my kit… I was still in range of the receiver, and like I mentioned earlier it isn’t perfect, sometimes I still have to go back and check it from the receiver, but I cannot describe how incredibly freeing it was to be in a conversation, wonder what my blood sugar is, glance down at my watch, and see my BG value right there… barely a pause in conversation, no having to explain anything, no conversation change followed by “What’s that?” having to launch into a whole… this is what type 1 is, no it’s not like type 2, no I can’t exercise it away, yes, I know you can’t believe that I was diagnosed as an adult, but really it’s not that uncommon, (insert other trite questions/explainations). Don’t get me wrong, most of the time I am happy to be the advocate, if I am the only type 1 someone has met and I can do something so that they have a better understanding, I’m all for that… but maybe just not all the time, every single time… just a few times I would like to be able to check that I’m safe without having to launch into all of that, this is what the Apple Watch has given me. I can’t explain what that 20 feet of freedom from the Dexcom receiver has meant… I could try to explain the emotional component to the technical and objective explanation above, but I just can’t put words to it… freedom, space, safety, independence, ownership, scary/amazing… I’m not a writer, just a diabetic with lots of feelings.

I hate this image. I hate everything about it. First off this person cannot do simple subtraction, second, and more importantly it illustrates the complete and total ignorance of some people when it comes to understanding diabetes, type 1 or type 2. Add to this (math joke, womp womp) the misunderstandings between type 1 and type 2, which are two entirely different diseases, similar treatments are used, but the causes are entirely different… go ahead, ask a diabetic if they have the “good” kind or the “bad” kind of diabetes, I dare you…

I came across an article on my LinkedIn feed calling for the rebranding of type 1 diabetes to Auto-immuine Beta Cell Disorder or ABCD for short. The name makes sense, and speaks to the cause rather than the effect of the disease, which is how types of diabetes are classified in the first place. We saw an initial rebranding to type 1 from juvenile diabetes to address the association that only children could be diagnosed with type 1. Is this the next step? Could/would this stick? It would definitely help with the confusion with type 2 and maybe stop a few people from telling me about their (inser connection) who got on a diet and started working out and now they don’t have diabetes anymore… I don’t know though, I’m not sure how I feel about saying “I have ABCD” sounds kind of made up, like when you put place holder text in a presentation.

I am attending the Stanford Medicine X conference and as with any conference when you are walking around you hear snippets of other people’s conversations, for example… “the longterm damage caused by diabetes” …okay, I can’t directly remember any others… so most likely this comment was not all that inflamatory and the inflection was probably in my head. The last time I tested I was at 384… I’m foggy, my mouth tastes terrible, my eyes hurt, I want to take a nap, I have the beginning rumblings of a headache… and I’m at this amazing conference where I want to be able to pay attention and learn and interact with people, but instead I am sitting outside nursing some tea (for hopefully hydration and tast adjustment purposes) and writing this — trying to address the emotional and physical aspects of this stupid fucking disease. I’m not as angry as I used to be — at least not as regularly, but I really really really hate days like this, I just want to cry… or more accurately I’m on the brink of tears that are a combination of emotions, headache, and aching eyes… the eyes more than anything remind me of the long term complication possibilities of this disease and how days like these are puttin gmy long term health in jeopardy… and then I get mad at myself, feeling like I’ve failed at diabetes, simultatenously failing myself and in the eyes of everyone else. I’ve thought about locking this up, trying to be positive, looking on the bright side, but I think that will only speed up the burnout I’m already feeling — letting this out here keeps me sane, it keeps me from acting out in other ways… becoming non-compliant, lashing out at friends and family, holing up in my room with Netflix, and a host of other non-productive behaviors. I just have to keep reminding myself that it is one day at a time, today will end, my blood sugars will get better, I will feel hopeful and happy again — today will end and tomorrow I will get to start fresh, it may not be perfect, but it will be different and I will handle it then… wooo sahhhhh

Over stimulated doesn’t cover it. I’ve avoided really writing for awhile, I went back into the the half processing of thinking something through, but never writing about it, so not closing the loop on processing anything… so the same shit keeps surfacing and sinking, round and round, as I also accumulate more shit… and the cycle goes on. At Stanford Medicine X this weekend and it’s been awesome, but it has also just added so many more things to think about. My head is swimming, in a good-ish productive-ish trajectory, but swimming nonethless…. Right now it’s all I can do to just keep putting one foot in front of the other. Remembering to eat, breathe, and take quiet time as I can and as I need to… I’m half writing this here just to justify it to myself… woooo sahhhhh.

I feel like I’m living in a parallel universe. First off, I’m living in MD… in my parent’s house… let’s just pause and digest that one for a minute. no seriously. in my parent’s house… when I left for college I swore I would never come home… that person, the person that ran to CA, to USC… and let’s be real, away from home… that person doesn’t exist any more. In fact, there have been a few iterations of Sophie since then, but I’ve landed on this new one for the moment… I’m sure there will be more iterations, I hope there will be, I never want to stop growing, changing, evolving, but this stage is kind of awkward… I would like to move onto the next stage already… the one where I feel healthy, know how to eat and exercise, and live, as freely as I possibly can from this bullshit disease that has me ever dependent upon manufactured insulin. bullshit. fuck. pisser. god dammit. fuck.

what’s my blood sugar? wait, when do I expire?…how much of the three days do I have left? I mean when does my pump expire? +8, so when does it really expire? what will I be doing then? Am I sure that that’s what I’m doing? will it change? do I care? is it in the middle of the night? or early in the morning? when I most likely will roll over on top of the screeching pod and continue to sleep, then dealing the rest of the day with the fall out of having no insulin for a few hours… (#fail but #truth)… when does my pump expire? when do I expire? sometimes I’m not sure which is the real question is… today’s answer is 11:31am +8 = 7:31pm… around dinner time, I’ll probably be awake and most likely will change it on time… I think I’ll be home, I’ll have to remember not to go out for dinner… fuck this. fuck diabetes.

there are words I never thought I would say. hiking the Zion Narrows in Utah with a friend (same trip where I had to tape the crap out of my Dexcom to stay on), we were taking pictures of each other in this mini cave on the side of a mountain, I turn to my right side and asked to make sure that I had a picture where you could see the pod placed on my right arm… I am proud that I’m attempting and able to do these active things despite all the extra planning needed to accommodate diabetes. My backpack was a bit heavy with the extra food, juice, and diabetic accessories, my friend offered to take a few things for me… I declined, I want to know what the full weight of enough water and gear is — if I need help a mile or two into the trail I’ll ask for it, but my goal is to be able to carry everything that I need for myself by myself — I will always have to carry those things while hiking, so I might as well adjust to it rather than fighting it… and you know what, it was okay… and drinking water with the added benefit of it making your pack lighter is great incentive to keep hydrated 😉