20
Nov

Hopes and frustrations

The "Cure Research for t1d" email blast today came with some disheartening news. MK-2640 has been cancelled due to "lack of efficacy."

Not familiar with MK-2640? It is was Merck's Smart Insulin. It has been going through a (slightly modified) phase-1 trial since early 2015.  Not much info seems to be available re: the failure if the drug.
I've been following MK-2640 with a sort of cautious optimism for a few years now. It seemed real and possible and worth investing a bit of hope.
Hope's a bitch sometimes, isn't it?

3
Sep

Another dx anniversary 

A few words for my Diabetes.
So, diabetes, there's not much to note this year. It's a Sunday; I spent most of the day cooking and doing laundry. Exciting stuff. You know all about it- you followed me around all day, just as you have for the past few decades.
I started a new sensor but was about to eat dinner, then had just eaten, then ate dessert... so by the time I checked to calibrate, I was running pretty high. Hardly surprising. You remember this, I'm sure.  After all, you were there to refuse to take my sensor calibration. "Too high," you told me. "Try again later."
I recently heard some good news about having CGM evaluated for coverage in my province. More on this later, but it could be very exciting. Who knows, diabetes-- maybe more folks in my province could be equipped with the tools and the tech that we need in order to kick you back where you belong??
Diabetes, you might have noticed that I didn't get in fights with anyone today. I didn't get rip-roaring drunk and bawl my eyes out about you, the incessant nuisance that refuses to leave me the fck alone. I didn't cave to the unhealthy habits of back in the day. I was....okay.
Maybe this is growing up? It feels like quiet resignation. A resigned sort of sadness. I might not be ripping into anyone who dares piss me off today, but I'm still feeling that deep grief that can't be paved over no matter how hard you try to ignore it. I guess this is now it is.
Diabetes, it's been 24 years. I don't speak to you directly very often, as I find it hard to stay reasonable in these conversations, but I will say this:

As ever year,
I wish.

I hope. 

I very sincerely pray that someone; some divine ruler, some masterful scientist, SOME ONE hears these dreams of mine.

I hope only one of us is left this time next year.
Yours,
Melody

11
Aug

Misc thoughts that have been floating around

I've had a few thoughts and things that keep coming back. In no particular order:

  • We moved about a month ago. In the midst of unpacking and tidying, I've had a few lows that have fuelled house-cleaning rampages. These flurries of vacuuming, bleaching, etc are incredibly productive, if not particularly healthy.
  • Hoosband was away camping with friends about 3 weeks ago. I fired up the Minimed Connect and added my mom to the list of people to be alerted by text if I went low, since Hoobs wouldn't have any cell service. Night 2 of this camping trip, I had a bad overnight low and I woke up to my dad offering me a glass of juice. I really, truly thought I was in good shape and had a handle on my overnight blood sugars. Guess it just goes to show that things are never certain when it comes to diabetes. 
  • My mom came grocery shopping with me on my first shopping trip after the move. When I mentioned that I needed dish soap, she pulled me aside and solemnly explained how I should go for the soap with a flip-top instead of a pull-top, as the pull-top bottles tend to get all gummed up with soap. I ended up stifling a laugh as I told her that it is a new house, yes, but this is far from my first time buying dish soap. I know what I'm doing. Sort of.
  • I still haven't finished unpacking my pump supplies. I'll get to it... when the current box of infusion sets runs out.

Diabetes has been taking a backseat to the rest of Life lately. That should really change, soon.

11
May

Another endocrinologist visit

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.

30
Mar

Check it out

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. 

http://www.hqontario.ca/Evidence-to-Improve-Care/Health-Technology-Assessment/Reviews-And-Recommendations/Continuous-Glucose-Monitoring-for-Patients-With-Diabetes

https://some-diabetic.tumblr.com/post/158987681521/diabeticink-26250-out-of-pocket-for-3-more

31
Jan

I did this to myself

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).
Well, then.
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.

Looks like I have some tidying to do...

14
Jan

Openaps progress, January 2017

I've got the pi recognizing my pump. I can send commands from the pi to the pump. Working on reports (I think) to summarize data now.
I'm also learning that there is an entire community of openaps folks online who provide tons of help, suggestions, & encouragement. Exciting stuff!!

25
Dec

Christmas 2016

​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!)

2
Dec

A bit of excitement on a Friday afternoon

This was this afternoon's little slice of joy: learning that some hardware got delivered!

Canada post delivery notification

One piece of what I need to build myself an #openaps rig has arrived! I've got enough now to get started.

Hoping to make some progress this weekend :-)!

4
Nov

13? Balderdash, says I!

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:

CGM reading of 12.8

CGM this morning


Confirmed via fingerstick:

BG meter value of 12.3

BG via meter


Produce ketones that look like THIS:?!

Ketone stick measuring high ketones

PURPLE ketone stick


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.

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