JDRF T1D Symposium: Bringing Research to Life

I'm attending a JDRF conference this morning. The focus is on research, whether treatment-based or cure research, for type 1.

I'll update as the morning progresses, but here's a quick snapshot of the first speakers they have lined up:

The agenda for the JDRF Research symposium, page 1

JDRF Research symposium agenda, pg 1

JDRF Research symposium agenda, page 2

JDRF Research symposium agenda pg 2


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?


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.


My first  (other) wedding! (and other concerns)

I attended my first big event as a married woman tonight.

I felt iffy, & checked leading up to the event. I got a 2.2 on a bg right before the bride walked.

Chug a glucagel.
Today is NOT  about me. Do NOT let this become a thing.


ChugAsMuch as possible.
More juice.

Today is not about me.


What do I have to do to not make a scene? Let's keep this quiet. Can I stand? Ok, we are standing. I am clapping. Good, time for sitting again. Why did I pick a seat on the end of an aisle? If I end up needing to suck back another pouch of liquid glucose, I am RIGHT in the line of their pictures. Let's  have less glucose and just try really hard not to be embarrassing until the ceremony's over.



Post-wedding contemplation revealed that thoughts during the ceremony were all over the place. I had a pretty bad low minutes below it started, and it was bad enough that even the Husband was worried enough to debate marching us out of there. I'm not sure whether it was the heat (holy moly it was 30+ degrees) or the excitement of a friend's big day, but that low hit me hard.


There are some times where diabetes gets to be front-and-centre.

If it is acting up and requiring that I stop other activities in order to treat a high or low, I will respond. Definitely. Stop. Everything and Fix. It.
If it is life-threatening, on the other hand? That is a different issue. That is a recruit-the-troops, call in the friends, have backup people because I'm not sure I can take care of myself sort-of-situation.

In this case, a bg of 2.2 was leaving me feeling fairly incapacitated. My head was fuzzy and I was worried (very worried) about being able to stand in my 1.5" heels. I had my wonderful (and highly concerned) husband watching me very closely for signs that he needed to say "fuck this wedding, I might lose my wife" and call an ambulance.


Let it be known that I did not believe it would get to that point.

I have a feeling that he did think that it might get that bad. He knows I'm very sensitive to heat, so even when I think I'm in the clear, sommmmmmmmetimes the weather gets to me more than I expect.

I chugged a glucagel and suspended my pump. Not reassuring for him, I know, since my pump was also set to vibrate-mode during the wedding, which means that any additional low alerts would be evident to me but not to him.


This low brought me closer than lows usually do, but this one was not life-threatening.

With no action on my part, it would have been. Absolutely. No argument there. 2.2 on a hot day is going to get worse, maybe quickly.

did treat it though. I spent what I'm sure was a beautiful wedding entirely focused on breathing and maintaining my balance in my chair.

I'm part annoyed to admit that it was necessary, but proud to say that at least I did not fall out of my chair mid-ceremony. Thank goodness for small miracles?*






*In case you're curious, it was a beautiful wedding. And a lovely evening altogether. :)!


Wedding day!

Today I marry the love of my life. I'm so excited to make promises and vows to this man who I love with all of my heart.


I can't imagine my life without him, and he tells me he loves me too -- broken pancreas and all.


(to be fair, I do have some good qualities that sort of offset the broken-pancreas stuff. I think.)


I feel like the luckiest girl alive <3


Emotional Eating with Diabetes (part 1)

I've started reading Ginger Vieira's book, so here is Part 1 of what I imagine will be a 2-part review:


The Likes:

The writing is extremely relatable. There is no technical jargon, and the author uses plain language to describe the cause-and-effect relationships that exist between things like overtreating lows/weight gain or self-worth/self-sabotage, to name a few.

The worksheets and blank spaces give a person room to make a commitment to follow through by putting their goals in writing. For some, this can be a useful tool.


The Dislikes:

There's really only one that I've noticed, and it's more of a personal reflection than a critique of the book or the author. The pointed truths about how diabetes can impact eating habits and relationships with food are not easy to digest. Uncomfortable truths are just that - uncomfortable, and honestly that pretty much sums up how I've been feeling about my relationship with food since I began reading. Hopefully this discomfort can serve as the impetus for change.


Remember I'm not all the way through just yet, so Part 2 will include my overall thoughts on the book as a whole.


Nancy says hi!

Hia. I am the bff. I am the sounding board for ideas. I am also the person who runs to mel with every single problem I ever have and expect full support. She is my person. And I am lost without her.


Overnight lows

I've been having some issues with overnight lows lately.


I've been setting a 70% basal overnight for the last few weeks. Most of me knows that a 70% basal will make me wake up ok; fortunately for me I have a pretty solid network of friends who help me to fee not-so-terrible when I've had some delicious delicious wine.


My overnight basal rates have been too high for a while, and the weird thing is that it seems to take having friends over for dinner and drinks to figure out that I need to do something more permanent than a 70% overnight basal.

Bah! I don't want to have to re-jig my overnight insulin rates! Sometimes changes, whether stress levels or natural life stuff, BLOW.


Diabetes and depression: 1

This is not hard to talk about.

I actually haven't had problems talking about it to family and coworkers. Friends, too, although I haven't told all of them. It gets tiring, having the same conversation over and over again.

It's difficult to write about it. I was a star in English class in high school. I studied sciences in university, so I didn't spend much time in languages or the arts or courses where I could improve upon my communication and literary skills. I had one mandatory English 101 class; but that's about it. Writing, to me, requires clearly presented and well-articulated thoughts and arguments. Since I was a child I've always loved to read, so writing, to me, is reserved for masters of the art. Writing is reserved for people who do it well and exhibit skills and expertise in communication.


I do not have these skills. I started blogging because writing, even if I did it terribly and without any measurable success, felt like it helped me to clear my head. I feel better about whatever mess is in my head when I sit down and map out thoughts and arguments.


I've been ignoring or avoiding writing and blogging lately. My head has felt like more of a mess than usual, and that mess is very difficult to sort out into manageable piles that can be dissected into coherent and meaningful posts.


I am trying to sort through that mess.


It started last summer. I recognized that many of the feelings that sent me to therapy in the first place were edging their way in to my psyche. I slept a lot, spent more "me" time just resting and relaxing and avoiding big group outings and when I did attend these big group events, I found them exhausting. I slowly lost feelings. I used to feel happy, excited, enthusiastic, and passionate. I felt angry, furious, frothy rage-filled wrath. I felt love. I felt a deep affection, a longing, and a devotion to people in my life who inspired these feelings. I felt tired, but a tired that was so deep in my bones that the exhaustion went right through me because I deserved the feeling. I felt life, and felt it so strongly and deeply because I truly felt like I had earned it. That...changed. It's impossible to say how or why, but slowly that slipped away from me.


I started revisiting my therapist in September. I had seen this particular therapist last year, and found her to be excellent. I could feel that something bad was going on, so early September I gave her a call. Her schedule was pretty full, but I was able to see her at the end of the month.


I think she could tell right away that I was struggling. Back when I first saw her she had helped me to work on balancing the demands of diabetes and everyday life. She helped me to work through those things, and helped me to figure out my life so I could feel like I could handle it.

In my sessions in October I received assignments like:  exercise. Walk the dog. Take those walks with the Boyfriend. TALK to my family about when I felt crummy.
I tried these things. I really did try.

By November, she encouraged me to visit my family doctor. She talked about me taking some time off to recover. My family doctor agreed.

I had some conversations with Boyfriend, and some of these worried me. I could tell he was worried. He knew that something was going on, something a little worse than just a temporary thing.  I hate worrying him. It breaks my heart to see him hurting and wondering whether his continued presence contributed to all of this.


My people wrote each other letters. My therapist wrote to my family doctor and recommended to him that I take some time off work. She also suggested that we consider medication. He agreed with her assessment, and started me on a course of antidepressants.


The first few days were rough. I've been having some significant issues with nausea, and the first three days of meds were the worse. There was a lot of vomiting.... like a lot. Soooo much puke. That's gotten better, but not significantly. I'm able to keep down food by dinner every day -- sometimes earlier! -- so it's still improving, but slowly.


It feels like I am still working through the diabetes burnout. The funeral this week didn't help. Time to myself has been good, I think, but still it has been a slow process.



I had an endo appointment scheduled for today.  I don't normally look forward to these appointments. I have an excellent endo whom I absolutely adore, but that doesn't change the fact that medical appointments are never fun. Endo appointments always involve a trip to the hospital to do bloodwork in the week prior to the appointment, PLUS the whole download-pump-and-cgm-data thing, so overall each appointment ends up being a moderate amount of work.

I went last Friday (over an "extended lunch hour", where I leave for ~90 minutes to go to the hospital in the middle of the day, then stay late at work to make up the time. I really need to stop doing this on Fridays -- staying late on a Friday is never fun) for the blood stuff.  This morning I brought printed copies of my Carelink Device Settings, Sensor Overlay, and Weekly Logbook reports of my pump/cgm data to work. I also managed to turn my pinkie finger purple this morning (probably from a lancet set to go too deep? Love when that happens...not), which was a bummer.


It can be easy to get sucked into things like that. I was fixated on a few small things, minor issues, and perceived injustices: "UGH work is so busy, and I'm losing half of an afternoon to go to this appointment."  "UGH My finger has a gigantic bruise. It hurts to type/use a mouse."  "UGH TOO MANY THINGS ARE HAPPENING."


Later this morning, a shooter attacked a soldier standing guard at the War Memorial downtown, which is about a 5-minutes walk from the building where I work. Cpl. Nathan Cirillo was killed. The gunman got in a car and drove to the Parliament buildings, where he entered and again, shots were fired within the Centre Block. He was shot down by Sergeant-At-Arms Kevin Vickers.

My building went into lockdown shortly after the first event, and stayed that way for most of the day. We were allowed out of the building late this afternoon, and I walked about 40 mins to get to a transit station (about 1/3 of the distance of my total trip home) to avoid the traffic of people swarming out of the downtown core.

Of all of the things experienced by the people in my city today, my minor annoyances from this morning don't even deserve a mention. Perspective is a funny thing.



My heart goes out to the family and friends of those hurt or injured today. I feel so, so grateful for the heroes who stepped up today: our police, fire, and EMS first responders. All amazing people.


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