Hi, I'm Casey. I'm a professor, and also two months ago
I was diagnosed with type 1 diabetes. Usually I post videos about my research and academic advice
but November 14th is World Diabetes Awareness Day and I personally have gotten so much value
out of the community of people with diabetes on YouTube. But I wanted to make a video about this
in hopes that it might help some other people and also because I know so many academics with chronic
illnesses and I also think that this is something that we should be talking about
in terms of people who are in graduate school or other parts of academia. So you might be thinking,
Casey, you're pretty old, isn't type 1 the kind of diabetes that you get when you're a kid?
And the answer is yes, it usually is. If you do not know that people can still be diagnosed with
this illness in their 30s you are not alone. In fact i did not know that myself but one of the
reasons that I wanted to make this video is that from what I've heard and also my own experience,
I think that a lot of people my age are actually being misdiagnosed with type 2 diabetes. So there
are other videos and resources that could explain this in much more detail and much
better than I could, but very briefly... this is a pancreas. Your pancreas produces insulin.
Insulin is very important because it regulates blood sugar and if you don't have enough insulin
or if it's not working properly glucose sugar builds up in your blood and that is very very
dangerous. So if you have a normal pancreas, a happy little pancreas, whenever you eat food that
breaks down into glucose - which is by the way a lot of food, in fact even protein can eventually
break down into glucose - but definitely carbohydrates, which doesn't just mean sugar,
it also means pasta and rice and bread. So if you have a normal pancreas when you eat those things
it knows just how much insulin to release to keep your blood sugar at a normal range.
So if you have type 2 diabetes it means that you have become insulin resistant. It turns out that
I actually have type 1 diabetes. Type 1 is an autoimmune disease, not caused by anything,
it has nothing to do with how much sugar I ate or didn't eat, it means that you have antibodies that
are attacking cells in your pancreas that produce insulin. The way that you confirm what type of
diabetes you have is to do two types of tests, one tests for how much insulin your pancreas is
producing and one tests for whether you have those antibodies that could be attacking your pancreas.
My test results were yeah you've got basically no insulin and yes there are antibodies, which was a
huge shock to me in part because I'm, you know, in my late 30s. When people my age are diagnosed
sometimes the term is latent autoimmune diabetes in adults, basically means you get type 1 when
you're old. The good news is this diagnosis meant that I could get the correct treatment but this
actually brings me to the next thing that I think it's really important to understand, which is
how much this affects lots of decisions in your everyday life. I think this is the thing that has
really floored me more than anything else over the past just few months of dealing with this,
but I have to think about things like how much insulin do I need to take to cover this meal.
And I have to think about when I'm going to take it in relation because if I take insulin
and then don't eat soon enough my blood sugar could drop too low, which is quite dangerous.
If I eat too quickly after I take it it doesn't have time to kick in and then i get a big spike.
If i take enough to cover a meal and then I don't eat it all my blood sugar could also drop too low.
I've definitely also had some times where I underestimated how many carbohydrates were in
something and I got a huge spike and if it gets high enough you actually feel quite ill too. If
you've heard about how diabetics will carry around juice boxes etc the reason for that is that if
your blood sugar gets too low it's very dangerous and so you want to then eat some fast acting
carbs, juice is very good for this. I also have these glucose tablets that I carry in my purse,
something like skittles can also work very well for this.
But basically if your blood sugar gets too high that's bad, you need more insulin, if your blood
sugar gets too low, that's bad, you need more carbs. But being low is the more immediate
problem. Now this sounds very complicated it's even worse if you're relying on checking
your blood sugar manually. However now I have a continuous blood glucose monitor. This means that
i have a device that is checking my blood sugar with a small needle underneath my skin about
every five minutes and it sends the reading to my phone. So I can see a graph that looks like this
that shows me what my blood sugar is constantly and I can see how it changes in reaction to
insulin and to food. So this thing my dexcom, it's just sitting there on my arm reading my
blood sugar every five minutes and giving me the most valuable data that I can have right now.
Having this constant data is really hugely beneficial it's basically allowed me to
constantly run experiments on myself. So the other reason that this data is so important
is because even though I've mentioned the way that you have to take insulin to cover carbs etc
you actually need insulin just to generally live if you're not making any at all and so
in addition to the insulin that I take with meals I also have a basal insulin which is
releasing in my body throughout the day so you know type 1 diabetes can't actually be cured by
not eating, and yeah experimenting on myself. And the amount of work that is going into this
the small decisions that I'm making constantly and even the amount of math that I'm doing really
really makes me admire young people who are dealing with this illness.
I can't even imagine the level of maturity that a 10 year old must have in order to manage this
illness even with the help of their parents. I've been hanging out in some really great diabetes
support groups and if anyone is watching this and you are the parent of a diabetic child you
are amazing. So as I said I have gotten so much value out of the community of people on YouYube,
type 1 diabetics sharing their stories and tips and lives with youtube. So this isn't going to
become a diabetes focused YouTube channel. However if you are someone with diabetes and
like to see someone like you just living their life then feel free to subscribe. I will probably
make some more videos about this particularly thing, around diabetes and data and technology
because of course that's what I do in my day job. I'm an information scientist and a human computer
interaction researcher and I am very interested in things like the usability of insulin pumps and
data privacy when it comes to all of this data that we're creating as part of this illness.
Also to be clear I am in a very fortunate privileged position as long as I am paying
very close attention, trying to keep my blood sugar under very tight control. I do not have
to worry constantly about complications so this as a type of illness to deal with as an academic
is very different than for example if you have chronic fatigue or chronic pain.
I do think that this is something that we should be talking more about particularly
when it comes to graduate students. If you're watching this because you too are diabetic
go you I am impressed with everyone who has dealt with this for much much longer than I have,
particularly for people who started dealing with it at a very young age. And if you have watched
this and didn't know much about diabetes before I really hope that you have learned something.
I mean the first time that I probably ever heard of diabetes was Stacey in the babysitters club,
I really loved those books and now in the new netflix series she has a bedazzled
insulin pump which is pretty awesome. If you know someone who has this condition
maybe reach out during the month of November and tell them how impressed you are with how
much work they have to do every day to keep themselves alive. Also I hope that your pancreas
stays in tip-top condition, so happy diabetes awareness month. I'm Casey, thanks for watching.
iI also happens that I'm filming this on a day when I need to change my dexcom sensor.
So I have to do that every 10 days, sometimes they don't even last quite that long, but you know.
So I've already taken the one that I had off and the transmitter comes off of it. As you can see I
have some stickers on mine, I've gotten bling for my dexcom from a place called pump peelz,
I'll link to that down in the description below, but I decided to do pacman. So I
took off the old one, pulled the transmitter out, so the transmitter you only replace I
think every three months, so this is the one that I've had since the beginning.
And now I get to put in a new sensor. So it turns out that diabetes causes a lot of waste, it is not
a very environmentally friendly disease and one of those problems is this thing, so this is the
applicator, a new one of these things thrown in the trash every 10 days, so yeah not great,
but nothing I can do about it. All right so this thing is gonna pop that sensor with a needle
right into my skin, it's actually very painless and I've heard this as well from parents who have
children with type 1 diabetes that it's actually not too bad. I've also got my phone here so that
I can pair it with the new sensor. I've also got an alcohol swab here, I'm gonna put it right here.
So I'm going to wipe down that spot with alcohol, all right so it just goes
boop right on there like that, press the button, doesn't hurt at all.
Now see it's right on there and then we're gonna pop the transmitter back in,
now that's on there. So the stickers are optional, I actually haven't had a problem personally with
this falling off but I think especially if it's going to be on my arm I want it to look nice,
very small silver lining of diabetes, swag. All right there we go, all done, and now I'm ready to
chomp some fruits with my pacman. And actually now I have to wait two hours for this thing to warm up
so I'm not going to be getting any readings for two whole hours, usually when this happens or
sometimes when the sensor fails and it just stops working I will make sure to check my blood sugar
manually with a finger prick. So that's that. Now I have a new sensor and now I'm gonna have data!