At the airport, waiting for my plan to take me to Palo Alto, to MedX… I’ve been waiting for this since… well, really since MedX ended last year. It was a meeting of the minds, other patients and physicians who think like I do, focusing on a collective solution now, rather than waiting for a solution to come down from the sky. The excitement is almost enough to balance out the fact that I had to set my alarm for 4am… yeah, that was unpleasant. All that aside, I’m going through the pre-reading for the blockchain workshop again and it’s such an interesting topic… basically using Bitcoin technology with Healthcare, not sure if it’s scalable, but it could bring a patients data to the point where we could achieve cross provider cooperation… I cannot explain how great it would be if my endocrinologist could see the A1c results that my GP had ordered, instead of me having to bring piles of paper documentation to every different appointment — with some providers not even having all the information for the tests they ordered by the time I come back for a follow-up, effective wasting my time and their time for an appointment during which we can discuss nothing proved with data, only my subjective information as to how life is “going” — even as the patient narrative that has been tested and proven to be insufficient and ineffective at communicating the true status of their situation, good numbers over the past few days can easily wash out the consistently bad numbers of the past few months, and vice versa, leading the practitioner and the patient to decisions that may not be the best course of action for the patient… all of this could be solved if each provider just had the data that is available on their patient… that doesn’t seem like an outrageous ask, does it?
what my BGs have been doing
so my numbers have been kind of crap recently… I’ve been honest about that, haha. After having a hard look at the real data I started testing out temp 5% basal increases for a few hours at a time, that seemed to bring me right back into range, so I was starting to track where I would want to add the changes to my regular basal routine… and then, just like that I started to run low, without using the basal adjustments — go fucking figure. Honestly, your guess is as good as mine… okay, maybe not quite as good. With a dodgy work situation a few weeks behind me, maybe the relief from that stress finally made its way to my endocrine system, maybe the diabetes fairy decided to be cool this week… I don’t know, and I’m trying not to ask any questions and just keep doing the things I can control — eating right, testing regularly… etc., etc. Hoping that the (good stress) of MedX this week doesn’t spike me back up… it might, but here’s hoping it doesn’t. On that switch topic note… I am so excited for Stanford #MedX, and even more excited to be an ePatient this year — too many things to talk about… if you’re interested you can sign up to watch livestream or checkout the twitter hashtag #MedX and/or me @thacherT1D
So my most recent A1c was not great. I’m scared — I’ve become comfortable with vulnerability, it’s been the only way I’ve been able to make progress, but it’s hard when it feels like I’m living in a constant state of fear.
I’ve had a rough couple of weeks at work — I was so excited to accept a position teaching at the school I just graduated from, bringing up the next class of web developers in a program focused on helping student transform their lives (I know it’s a bit over the top, but really almost every student is here to make a drastic change in their lives, transformation seems to be the only word that fits) , but then my lead instructor turned out not to be what I needed or wanted in a boss — it took a month of trying to find a solution, going through the right channels, but I finally am now in a situation where I am happy and feel like I can actually grow and help the students grow as well. My whole body relaxed when I found out I wasn’t going to have to work with him anymore — Friday night, the ending of the week that ended this drama, I slept 14 hours more or less straight through.
My numbers have shown the stress, I’ve been stuck in the low 200s and can’t seem to kick it — and my body, my mood, my A1c reflects it. I’m hoping that with this new page at work I can slowly start to make the correction. It’s just so scary and I can’t decide which is worse, long term complications or short term sharp lows… I had to treat a low while teaching a lesson the other day… pounding a gatorade in between calling on students — hoping that my voice wouldn’t start shaking enough for them to notice, hoping that today would not be the day my co-workers would be tested on whether or not they really understood how to administer the glucagon… and then just like that, with half a gatorade down, I was in the 200s again… not great, but safe. I know there is a better way, I’m just tired — this is hard and there is no opt out button. Hopefully the new work situation will allow me to allocate effort back to my personal stuff… and when I say stuff, really I mean health and well being, because let’s be real, I don’t get to have stuff that comes before my health… and if my health takes up all my bandwidth, then I don’t get any time/effort for my stuff, for projects, for going outside, for doing anything other than taking care of my fucking heath… for 10 minutes of forgetting that I have this stupid disease. rant over. I need to grasp some of this time and actually go build some shit… a Harry Potter API may not be the best use of my time, but it’s fun, so there’s that, haha