My recent Endo appointment was a strange one. I grew up with disappointment and lectures every 4 months from my childhood endocrinologist, so I'm no stranger to the guilt and frustration that often follows one of these appointments. This time around was a bit different though.
When I visited the hospital a few weeks ago to have blood drawn, I had to renew my hospital card. The woman creating a new card for me asked if I wanted to sign up for My Chart, the Web service that allows patients to see lab results and clinic notes for all hospital services. Of course I signed up for the service, so a few days later I logged in and was able to see my lab results prior to actually seeing my doctor.
This a1c was better that my last few have been - significantly better. I hit a record for new lowest a1c! Needless to say, I went to that appointment feeling pretty pleased. It was unexpected, but certainly not unwelcome news.
At least -- not to me. Dr. A was less than impressed.
Maybe she was having an off day. Maybe she was seriously displeased and her demeanor was just her way of trying to remain restrained as she spoke to me about the dangers of having the kinds of lows I've been seeing lately. Either way, we reviewed my data and agreed that this lower a1c was likely the result of overnight lows that often went untreated.
She made a number of changes and sent me on my way. I left that appointment feeling as though I had been chastised for not acting sooner. She's not *wrong,* per se, but UGH. This feeling is deeply unsettling. Even now, a few weeks later, I feel like I've failed. I feel like treating mild lows with temp basals is inviting in a worse low (which is exactly what she was getting at), and I've been reprimanded and sent on my way to think about what I've done.
I spent more than a decade learning from my childhood endocrinologist the many ways I could disappoint a doctor, usually using the twin powers of disinterest and lack of effort. Matching that disappointment, but swapping the cause out for burnout and lack of action, is a strange and discouraging place to be. ESPECIALLY when this time around, I've actually been trying as hard as I can for better #s.
THIS makes me feel like I need to work harder.
OHTAC emailed me last year about how they would be reviewing CGM as part of potentially fundable cost of t1d. I requested that they reevaluate their decision to deny coverage based on existing studies, and was told it would be reviewed this year.
I think I am getting quiet and complacent. I have cgm funding through work, so I have not been advocating as loudly for those who don't. This has to change.
I know I have no right to complain.
My site was on day 4, and as an upper-butt-cheek-infusion-set, it has seen quite a bit of wear over the last 4 days.
My 6-day-lifespan sensor was restarted and was on day 8.
I postponed changing my site and sensor last night. "It's wasteful to change a site when I still have a half-day of insulin left." "The infusion set doesn't even hurt that much. I'll just sleep on my other side again tonight." "That sensor worked so well for its first round! It will be fine for a few more days."
The lies we tell ourselves to justify not having to change a site. Not having to feel that jab, twice, as two devices are inserted for 3- and 6- day spans (or 5 and 10, if you tend to stretch out your supplies like I do). All of this led to me sitting at work this morning with a splitting headache and a thirst like you wouldn't believe (I'm at almost 2L of water so far. Been at work for just over 2 hours). Cal reminder alarm prompted me to check my BG and to be quite honest, I probably wouldn't have bothered if not for that alarm. My cgm had me at 8.4 and dropping, so I wasn't worried.
Still, though. I should calibrate.
Fingerstick, 18.6 (335 mg/dL).
Working on a set change with this kind of headache is challenging. I rip open an alcohol swab, then stop. Squint. Rub my aching temples. What was I doing? Oh, right. Syringe, wipe top of insulin bottle. Use now-disconnected pump to calculate the correction dose. Deliver correction.
Another alcohol swab. What was this one for? Wipe top of insulin bottle, feeling vaguely like I've already done this. Think back, pushing through the throbbing haze of red that clouds my head and makes coherent thought a distant memory. Aha! Yes, I did do this.
Do it again. Change infusion set. Charge transmitter. Replace sensor. Look at the mess of medical waste and wonder why I didn't do this yesterday.
Merry Christmas to all, and wishing you a wonderful holiday season filled with blood sugars that do not dip below 4 mmol/L, nor do they spike any higher than 8 (no matter what you eat for dinner!)
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...