Welcome, ladies and gents. It is November 4th, meaning that we are 4 day in to Diabetes Month.
For today, I would like to give you a glimpse into the frustration that comes along with this big ball of autoimmune-related shit called Diabetes.
Ketones start spilling out into urine at a BG of 13 mmol/L. This is a well-documented fact, check the American Diabetes Association or similar sites to confirm.
So why, then, does a BG like this:
Confirmed via fingerstick:
Produce ketones that look like THIS:?!
Please excuse me, I'll be spending the rest of the day suppressing the urge to scream while mindlessly beating my head against a wall out of frustration.
I had an endo appointment 2 weeks ago. For the most part it went swimmingly.
It started with a resident bringing me into the room and incredulously gawking at the pump clipped to my hip. "Whoa! You wear a pager?? Don't see too many of those these days!"
I groaned inwardly, figuring this guy must be new and assuming that this would be a long appointment. I gently(ish) asked if he had spent much time on rotation at the Endocrine and Diabetes Clinic, and he said no, today was his first day.
That explained a lot.
I think I taught him quite a few things. I showed him my "pager" and described how this was an insulin pump: look, here's the reservoir filled with insulin, the tubing, the infusion set. I showed him my cgm, and told him cgms last longer than infusion sets, at 6-7 days instead of 2-4. I mentioned that there are a few different pump companies and at least two CGM companies in Canada, so the reports and data would look different from other devices. He was speechless when I brought out the printed Carelink reports that my doctor likes to see (Logbook, Sensor daily overlay, and Device Settings).
To kill time, since I knew I wasn't going to be able to get any helpful medical advice from this doctor who, though he meant well, was nowhere near trained enough to answer the questions I have regarding my care, I showed him my toe. This is the toe that was brutally introduced to a very heavy suitcase on the last day of my honeymoon, which caused bruising and swelling, eventually leaving me with half a toenail. Gross.
The slightly inept doctor assured me that it looked good, and all there was to do was to wait for the nail to grow back. I had assumed as much, but it was still good to hear.
When my Endo arrived, she was positively beaming. She told the new guy that he was about to get some serious training, courtesy of a "model" patient.
Yes, she actually used those words.
I know that NOT bringing Carelink printouts doesn't mean I am any less invested in my care. I know that failing to check my BG 4-10 times per day does not mean that a patient is any less worried about the eventual onset of complications. I know all of this. That said, I was pretty frigging ecstatic to be recognized for the work that I do prior to
each most appointment(s).
We discussed most of the usual stuff: changed some basal rates, changed overnight insulin sensitivity, reviewed some blood test results. I found out that my a1c is at the most ass-kickingest that it has ever been, so I was pretty happy with this appointment overall.
We also talked about Eventual Family Planning. Husband and I aren't ready for that just yet, but my Endo took me through what I need to know when we do get to that point. It was then that I received a recommendation to see an ophthalmologist to have my eyes fully checked out prior to trying for a baby.
I see an optometrist every year, usually without much excitement. My eyes have stayed the same for about a decade, and although every appointment comes with the concern that This Will Be the Appointment Where I Get Terrible News Regarding My Vision, it hasn't happened yet. I've never before been referred to an ophthalmologis though.
Cut to today. I call the hospital where I see my Endo, and ask to be transferred to the Eye clinic. I ask about scheduling an appointment.
"No, you need a referral for that."
Email my Endo's assistant requesting a referral. Email bounces back; assistant no longer works for the hospital.
Call hospital general line. Ask who the new assistant for my Endo is.
"We don't have an assistant or Program Administrator on file for that doctor."
Call back, punch in the extension for my Endo's office. It is 11:20. "The phone lines are now closed. Calls to the Endocrine and diabetes Centre are answered between the hours of 8:30am to 11:30am and 1:30pm to 4:15pm, Monday to Thursday."
I give up, for today. I'm still at work, currently seething at the perceived injustice of having to wait two hours to make a phone call that I sort of think I shouldn't have to make to begin with, as a referral could have been provided at my appointment 2 weeks ago.
Still, I am humbled by the fact that I get to be upset about an inability to speak with my doctor, because I actually have a doctor.
Also slightly frustrated in admitting that the only person this hissy fit is harming is myself. Frustrated to admit that regardless of any delays, I still need to make this phone call (to get an email address, to email a request, to get a referral, to make another phone call to schedule an appointment).
It will get done. It has to, so it will. I'm allowed to be a little grumpy though.
So. Remembering the good hospital stuff (like how well that appointment went) to distract from the inconvenient stuff (aka the need to jump through hoops in order to get another appointment). Grrr.
It's 2am. You have had 6 drinks over the past 6 hours.
You have had a 70% temp basal set for the past 3 hours. It is scheduled to continue for 8 more hours.
Your current BG is 10.0.
Your cgm says 9.6 with a straight-ish line, so it's not too far off.
You have 0.3 units of active insulin on board. Your pump recommends an additional 0.9 units to treat the high bg.
You are a 40 minute drive away from the people who know how to help if things go south. The alcohol makes you much more sensitive to insulin than you usually are.
If you wake up with a BG above 12, your hangover will be magnified and you likely won't be able to make the drive home tomorrow. If you go below 5, your cgm will wake up half the cabin.
What do you do?
I don't love anything overly simple.
I think if it seems too good to be true, it probably is.
I'm not alone. Tons of self-help and self-awareness articles will quote the same damn thing... but advice re: diabetes tends to be sort of scarce, when compared to general health advice for otherwise healthy people
Here's some of mine. It comes not from clinical studies or analyses thereof; rather, from life experiences of a girl who's still here after 23+ years. Or something.
Most of my advice is stolen. Literally stolen. The best piece comes from Joe Solowiejczyk: "You don't have to like it, you just have to do it.+"
Nothing says that you have to love the tens or hundreds of daily things you do to stay alive. You still have to do them.
I still work on this. I haven't seen a therapist in a while, but when I did, it was largely focussed on how tf to do this. In all honesty, I've been debating returning for quite a while, and with the wedding behind me I don't really have much of an excuse for postponing. This is a necessary conversation.
This is all completely necessary stuff. It's a little more than the average person needs to do to stay alive, but still. Necessary.
That doesn't make it any easier to do.
I know I'm lucky. After a solid week of job cuts, I am still employed. I still have some of an insurance category re: physio, therapy, etc (alllll under the same group). I can talk, I can decompress, I can try to work things out.
With my own prophetized future of Adult Who Has Her Shit Together, don't I kind of owe to to my future self to sort her current self out?
(and other reasons why I have a current buzzing sort of anxiety)
+ I've had this quote pinned to my dresser for 3 or 4 years. I know it's from him, but I'm having a hell of a time figuring out where it came from. I believe here? https://www.youtube.com/watch?v=9HNOOIhyU04 ++
++ Part of the "Managing Teenagers with Diabetes".
*Also, Kinnickinick bread the best grilled cheese** sandwich. Like holy shit, that bread is fluffy as fck, even after being frozen and retoasted. I'm sold. I think it's fantastic.
** the cheese is daiya cheese. Remember? I'm also allergic to dairy. 'sok. I remember. Can't bloody forget...
I know you are sick. You have been fighting game a sinus cold for days, and it seems truly miserable. You're stuffed up, your head hurts, and when I turn on a light in the middle of the night, the brightness stuns you and makes your blinding headache that much worse.
I know all of this. I promise, I really do.
Thing is, with a blood sugar of above 33... at this moment in time, I am sick too.*
My head hurts. My stomach hurts. I am thirsty as fck but if I give in and chug back a ton of water, I know I will throw up from overdoing it on fluids. I can't have NO fluids though, since dehydration makes insulin work less efficiently, and I reeeeally want my insulin to work as well as possible right now.
I did a middle-of-the-night infusion set change, since the site I started before dinner seems like it's not working. My whole body feels puffy and swollen from drinking liters of water over the last few hours. I promise, you are not the only one who feels sick.
Yours is a special, acute kind of Sick though. You feel terrible now, whereas my type of sick is a chronic slow burn that spikes every so often, then goes back to lurking in the background.
I really am sorry for waking you up with my lights and beeping and swearing. I hope you feel better soon, love. And I really, truly do understand: it sucks to feel sick.
*The manufacturer for.my meter says that HI readings occur with a bg above 600mg/dl or 33.3 mmol/L.
& I promise that a fair bit of thought went into this post name. I can't call it a big change. I tried to be excited, I really did, but a vague possibility of a new device that will be available in my region in an unspecified* number of years** is not really something that makes me feel particularly optimistic.
Still, it's a new development, and I do believe that any move towards a true artificial pancreas is a good thing -- even if it's likely to be a little while before it makes it to Canada.
So here, behold. Medtronic's latest and greatest: the 670g.
*The lovely Medtronic Canada staffer who took my call this afternoon assured me that across the corporation, staff have no knowledge of anything involving Canadian device approval. She clarified that it is not a case of them being prevented from discussing yet-to-be-approved devices; rather, Medtronic has said zilch about the 67og's availability in other countries.
**Just a guess. "Years" is hopefully a bit of a stretch. I imagine its probably going to be 1-2 years, especially since they're not even going to ship in the US until spring of 2017.
Today's title would be "a shedding rabbit stores an entire 3xtra rabbits' worth of fur: and other things you do not realize while wearing a black shirt and deciding to brush your pet"
Well, it's diabetes' 23rd birthday (for me, anyways). I certainly can't say it's been a happy one, but then again, none of them really are.
BGS have been fine today. I am still here. I can be grateful for that today. Complications aside, I am still here.
Shaky. Fatigued. A bit brain-fuzzy, so really needing to think before I speak.
Putting things down instead of holding them, because if I hold them you'll see how my hands are shaking.
Asking a lot of questions that I *know* will set you up for a big in-depth response, because that way I can participate by making "mm hmm" noises while not actually having to speak or form a coherent response.
Leaning against the counter, because it's less risky that way. Less of a chance I'll tumble.
Smiling brightly and in a way that I hope looks reassuring, so that you won't ask if I'm feeling ok because I look a little "off".
For months, life has been about wedding planning. Now I'm not planning anything, and I think a combo of hot weather and a lack of wedding-prep stress has left me with some pretty serious lows. This week has been making it clear that I need to tweak my basal rates.
Thing is, I don't want to say that it must be so nice to be done planning.
I don't want to talk about my health. It's not nice to be back and be "basking in no wedding stress!". It's not. It's really not. It's uncomfortable and debilitating and leaves me feeling weak and frustrated.
So please, please don't ask how I am. I will hope you don't ask, and if you do, I will lie. I will lie and I'll hope you either don't catch on or, if you do, you'll get the hint and not pry. I am tired and I am low and when I'm not low I'm high. If the beeping of my pump doesn't give it away, my bright smiles and quick escapes should.
Just give me a bit more time to adjust to my new stress levels. Ask me again in the fall, ok? Ask me how I'm doing and maybe you'll like the answer a bit more come October.