'I can be vocal for others, but I hate being vocal for myself' - Celiac and type 1 diabetes with Andrea Limbourg

Andrea Limbourg is one of the first people in the type 1 diabetes community I spent time with in real life, although we’ve met only a handful of times. I didn’t really realise until we were recording this episode how much of an impact she’s had on my approach to my type 1 diabetes, and I’m excited that you get to experience her wisdom in today’s episode.
 
Diagnosed in Canada in 1997, Andrea took off to study abroad in Ireland just a few months after her diagnosis. A decision that may be unfathomable to some, but Andrea has always found type 1 diabetes easier to manage in comparison to the debilitating effects of undiagnosed celiac disease that she experienced for years.
 
Fast forward to 2025 and now living in France, Andrea chats to me about how the two diseases impact both her and her family’s lives, as well as their similarities and contrasts.

‘Diabetes is all about the balance. All of my flexibility is in diabetes, whereas I don't have any flexibility in celiac. There's zero gluten. Not a crumb.’
 
We also discuss the emotional cost of being vocal about your health, moving countries with type 1 diabetes (for love!) and why despite ongoing advances in access to technology and the best efforts of her endocrinologist, Andrea remains on a DIY open-source insulin pump. 

JOIN THE TYPE 1 ON 1 INSTAGRAM COMMUNITY
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SPONSOR MESSAGE
This episode of Type 1 on 1 is sponsored by Insulet, the makers of Omnipod tube-free insulin pump therapy.
 
Using Omnipod 5 Automated Insulin Delivery has improved my diabetes management significantly with less diabetes decisions, and of course no multiple daily injections.
 
How? Well, Omnipod 5 automatically adjusts insulin every five minutes to help keep me in range, allowing life outside of type 1 diabetes to get bigger.
 
If you want to know more, head to Omnipod.com.

Episode Transcript

Speaker 1 (00:00):
This episode of Type one on one is kindly sponsored
by Insulette. More on that later. What I will say
now is that we have a shiny new Instagram page
dedicated specifically to the Type one on one podcast. It's
very exciting, So come and say hi and join our
lovely community at Studio type one on one. The link
is in the episode description. Hi everyone, and welcome to

(00:25):
Type one on one, a podcast that delves into the obscure,
complex and challenging world of life with Type one diabetes.
I'm Jen Greeves, and each week, with the help of
some brilliant guests, I'll be showing that there is no
normal when it comes to handlink this whopper of a
chronic condition, because we're all pretty much figuring out the

(00:46):
messiness of day to day life with diabetes as we go,
and most of all, even though it doesn't always feel
like it, we are absolutely not alone. Today's guest is
not a diabetes healthcare professional, but she is a huge
part of the reason that my time and range jumped
significantly when I went on my first insulin pump back

(01:06):
in twenty thirteen. Just a few months later, Andrea Limborg
made a passing comment about using temporary basals when her
glucose levels were dropping as a diabetes event, we were
both attending and from that point and for the following
ten years, it became the most used feature on my
insulin pump, likely preventing hundreds of high pos. So Andrea

(01:28):
knows her stuff when it comes to managing her type
one diabetes, which she has been living with since nineteen
ninety seven, a diagnosis that was intertwined with a diagnosis
of Celiac disease. And we're going to get into the
way that they combine and collide today. And there's a
professional crossover to as Andrea works as a project lead
in patient education and patient partnership programs at a Paris hospital.

(01:50):
Is that right at a hospital.

Speaker 2 (01:52):
Not in a hospital. I work for a small not
for profit. We work a lot with hospital systems, but
also with community based healthcare.

Speaker 1 (01:58):
Okay, so that's that. Originally from Canada, the French capital
is the city she has called home since she moved
there for love many years ago. Welcome Andrea to type
one on one.

Speaker 2 (02:11):
Thank you for having me jin. I'm so happy to
be here.

Speaker 1 (02:14):
I saw you squirming a little bit there at my
glowing introduction, but I wanted to get that out there
because honestly, that was game changing for me. And I mean,
it speaks to the power of community, it speaks to
having these conversations, which I know has been such a
through line in your kind of diabetes life since your diagnosis.
But also just I wanted to give you your props

(02:35):
because you very tentatively agreed to speak to me. But
I know how much wisdom you have just from speaking
to you in real life. So thank you for joining
me today. I'm very honored.

Speaker 2 (02:46):
I'm honored to be here too, and I think that
I think you're right in saying it was really a
passing comment, like I wasn't meaning to give you like
this giant dollop of wisdom of this is just what
I do because it helps me. Yeah, and yeah, I
was using a I made my dumb pump into into
an open loop system, but I was my brain was

(03:08):
the closed loop algorithm, and I was always adding a
little bit, taking a little bit away, so that it
was a lot of work at the time. And I'm
glad I ye have to do that anymore.

Speaker 1 (03:17):
Right, And that's interesting, isn't it, Because actually I went
to a consultant appointment once and she was like, you
are working as a pancreas using these temporary basils so much.
That's actually kind of how a pancreas would function. And
I think that's why taking my hands off when I
did then go onto a closed loop last year was
quite confronting because I just didn't have to touch it anymore.

(03:38):
And yeah, it's just it's just really interesting, isn't it
that one little nugget of information actually became such a
game changer for me. But it wasn't something that came
from the healthcare professionals. And that's not to undermine the
knowledge that I did get from my healthcare professionals. But
there's there's only so much wisdom time, you know, And
it is these these little things that that can make

(04:00):
such a big difference.

Speaker 2 (04:01):
I think healthcare professionals are often worry about They often
worry about giving too much responsibility, too much time, too much,
Like they don't want you to spend too much time
on your diabetes. They want you to get it right
all the time, but they don't want you to make
too much effort because they don't want to overwhelm you.
So I think it comes from a good place, but
then you don't necessarily have the tools that you need

(04:23):
to actually get where they are hoping that you're going
to go right.

Speaker 1 (04:27):
Yeah, And that balance is quite hard to strike, isn't it,
Because I think for some people that would be incredibly overwhelming,
and that's absolutely not the way they want to manage
their typewood diabetes, right.

Speaker 2 (04:37):
Absolutely, It's everybody's different. Some people are going to want
to go all the way and and other people aren't.
And sometimes it's hard for the healthcare professionals to kind
of see who's who, and so they tend to lump
everybody in the same category. It's easier to do it
that way.

Speaker 1 (04:50):
Yeah, And you have this kind of both sides of
the fence knowledge, I guess, like living with type one
diabetes yourself and working within the healthcare system, what has
that given you in terms of like the understanding for
both sides, Like that's quite a unique insight that not
a lot of people have when they're trying to feel

(05:12):
better or gather information and equally a stretch system busy
professionals trying to do their best with this.

Speaker 3 (05:18):
Huge pool of people who are all unique. What have
you gleaned from that.

Speaker 2 (05:22):
Yeah, I've gleaned a lot of things. I think I
worked for about fifteen years in public health, but not
directly at all in diabetes and so at a national level,
so I wasn't necessarily working with a lot of healthcare professionals.
And for the last eight years or so, I worked
in a hospital for five years and then in the

(05:43):
small not for profit for the last three years, and
I've been working much more directly with healthcare professionals and
so to be able to understand some of the constraints
that they have in their job, some of the things
they can and cannot say, some of the time, constraints
that they have, some of they the pressures that they
have just from the system that they're working in, and

(06:05):
but also sometimes the lack of I don't even know
how to say it. I think when when you live
with it, you have there, you have a different interest
in going to a certain length. And so the healthcare
professional is often I don't want to loop every lump
everybody into the same into the same group, but so

(06:27):
many of them it's their job, and so they they
go to school and they learn the thing, and even
if it's you know, recently a lot of diabetologists in
France have been going they've been doing a sort of
an eighty hour training course on closed loop systems, and
so great, they've got their course, They've learned the things,
and this is what they can now bring to their patients,

(06:49):
but they still don't have the nitty gritty of living
with it every day and being able to switch the
parameters and and you know, know all the little the
little hips and tricks that you can use on a
day to day basis when you're living with it. So
I think there's I mean, there's a limit maybe in
the interest that some have and they you know, they

(07:10):
learn their things and they then bring that to their patients,
but they don't necessarily take into account everything that each
person wants to learn about their own diabetes.

Speaker 1 (07:20):
Yeah, and since I've met you, you've always had this
kind of awareness of your health needs and how this
stuff is good, but it's not designed for me. Therefore,
I'm going to do whatever I can to make this better.
You mentioned they're turning your dumb pump into a loop.
I think you were one of the first people I
met who was.

Speaker 3 (07:39):
DIY looping, and that would be some like many many
years ago.

Speaker 2 (07:42):
Now, yeah, I've been DII looping for six years, but
I mean, certainly there have been there are many people
who started well before me. Yeah.

Speaker 1 (07:50):
So is that interest, if you like, or that kind
of more active approach something you've had from the get go, or.

Speaker 2 (07:58):
Yeah, really abstely from the beginning. I when I was well.
I mean, this is we go back a bit to
the beginning. Let's take it back, let's go there. I mean,
there's there's all the way back to the to the
beginning of the of celiac symptoms. But if I started
the diabetes diagnosis, I was in third year of a

(08:19):
biology degree at university, and so I had a good
amount of scientific knowledge of what diabetes was, even though
I didn't know the details. But when the nurse came
into my hospital room to say that insulin is the
key to open the door to the cell to let
the glucose in. Yes, and that part I get. Yeah,
I can visualize it. I can see what the cell

(08:41):
walls look like, and you know I can. I get
that part. And so I was able to skip over
some of the medical and scientific side of it because
I already had that. But I also had access to
a to a university medical library, and so when I
went back to school, I just dove right in and
I was looking up scientific articles and things like that.

(09:03):
So I was always very interested in knowing as much
as I could. I think there are a lot of
reasons for that. Part of it is just my personality
and the fact that I was in school for sciences
and health sciences. But also I have an uncle with
type one diabetes who was not at all interested. He
just did what his healthcare professionals told him to do,

(09:27):
and so I could see that that contrast as well,
and that when I was diagnosed, he had had diabetes
for thirty seven years, and within two months I knew
far more about diabetes than he did, and so it
wasn't you It's not a contest, and he did the
way that he needed to do, and the fact that
he was diagnosed in nineteen sixty and you know, there's
a there are so many different factors in that, but

(09:51):
I just I realized that it was it was going
to be interesting for me and good for my health
and good for my diabetes management for me to know
as much as possible, And so right from the beginning,
I dove right in and always tried to stay right
on top of sort of new technologies, news about research cures,
things like that, everything and diving.

Speaker 1 (10:13):
Right in the nineties, as you said, was going to
the library, and I imagine there was a lot of
very medical stuff, but not a lot of kind.

Speaker 3 (10:21):
Of human experience things. Yeah.

Speaker 1 (10:26):
Can you speak to that a little bit and in
terms of like how that's changed, how you now access
your knowledge and what you make of this, or having
witnessed that and actually been quite kind of in it,
if you like, in terms of your own interest.

Speaker 2 (10:38):
Yeah, I mean it's true. So I was diagnosed in
nineteen ninety seven. There was an Internet. I did use
the Internet because I was on a university campus. There
wasn't much on the Internet, and so there were a
couple of things. When the word diabetes first came up,
when I had been so sick, I went to I
don't even remember what search engine was at the time,

(11:00):
it was before Google existed, and and I typed in
diabetes and it told me that there were two types,
and one was for children and one was for old people.
And I thought, well, I'm twenty one, I'm neither in
neither of those groups. So I guess I don't have diabetes,
which maybe pushed back the diagnosis another couple of days,
even though it had already been pushed back quite a bit.

(11:22):
And but I so, I still did use online resources
when I could, when I could find them. But when
I was so when I was diagnosed, I was in DKA.
I spent the first couple of nights in the ICU.
Then my my uncle came in to see me when
I was there, and I realized in that first that

(11:43):
first conversation that we had. You know, it didn't come
up in as many words, but but I realized how
important it was to be able to talk to somebody
else who understood who you know. We talked about how
dry your mouth can be, and nobody understands how dry
your mouth can be if they haven't been in DK

(12:04):
and and so like. And it was just those little
nuggets in that first conversation that I had with him
that I thought, I don't want to do this alone.
I need to find other people. I was at university.
Five months later, I switched countries. I so, I was
living in Toronto at the time, and I went to
live in Ireland for a year. So I was it

(12:25):
wasn't a great time to go looking for like in
person support groups because I was moving around and things
like that. But I did find some lift serves and
some some Yahoo groups online at the time that were
it was primitive, but it was, but it was there,
and there were other people that were online and chatting,
and so I was able to find very quickly some

(12:46):
some resources and some and some real community long before
social media, long before. So yeah, sort of the the
Internet in the and the the diabetes online community that
we know today. But yeah, them some bout forums and
Delphi forums that were that were there in the late nineties.

Speaker 1 (13:05):
Yeah, And I think although the platforms have changed, and
like our phones have obviously changed, that need for connection
and understanding and relatability has not changed at all, Like,
if anything, more than ever, I think, yeah, such an
integral part of how I've been able to kind of
move through life with type one diabetes. So, and I
think coming from a place where you mentioned you you

(13:27):
obviously were very unwell by the time you were diagnosed,
and I know you had quite a journey to your diagnosis.
So do you mind if we talk a little bit
about what that was like for you?

Speaker 2 (13:36):
Yeah? Sure, So, as you said, I have both Type
one and Celiac, and I started to feel quite unwell
sort of the summer of my sixteenth birthday, and my
it's not glamorous conversation, but you know, my symptoms were bloating, gas, diarrhea.

(13:57):
But then for a reason that I hadn't didn't understand
at the time, there were sort of some other underlying symptoms.
I was super super tired. I was not absorbing things
that I should have been absorbing for reasons we understand now.
But my iron was really low, which also brings the tiredness,
and so you know, they would give me iron supplements.

(14:18):
It would come back up, and then it would fall
off again and I'd lose weight, and then bit by
bit I'd gain it back, but then I'd lose it again.
And I had, you know, years and years of sort
of searching what could what, what's what is my health problem?
What are my health problems? But nobody was getting to
the bottom of it, and it kind of came to

(14:40):
a head in my second year of university maybe so
I was twenty where I had a couple of hospital
hospitalizations because of this like like ridiculous pain, like massive
bloating terrible diary. I missed. I missed exams at the

(15:00):
end of my university year because I literally couldn't leave
the toilet, and so I had a couple of hospitalizations,
but they still couldn't find They did every test imaginable
other than the small small bowel biopsy that they needed
to do to find my celiac and sent me home
with nothing wrong with me, really, And so that's where

(15:23):
I was, like, I had doctors say to me, you know,
it's in your head, it's stress. You're a university student,
you're a young woman. It's normal to have pain like
it is. I even had one who who said to
me in a really really accusatory way, are you happy
that you've lost weight? I'm a twenty year old woman,
Like what how am I supposed to answer that question? So,

(15:45):
but I was sick. I wasn't trying to lose weight,
you know, yeah, very clearly.

Speaker 1 (15:49):
So at a time that's so formative as well, like
that sounds like it had such a huge impact on
your life, on your day to day.

Speaker 2 (15:58):
It did, it absolutely did, and but it but it
also just became part of my life. It just after
a while, you don't talk about the symptoms because they're
just there and nobody's doing anything about them. And so
after a while, it was just this is my norm,
and so this is how I'm going to continue my life,
you know. And so then in my third year of university,

(16:21):
I started getting sick again. I was losing weight. I
was really tired. I didn't, you know, I thought, here
we go again, like it's you know, it was. It
was always kind of this wave of coming and going
and stuff, and so I didn't really think much of it,
and I didn't go to the doctor because all the
doctors had had given me nothing over these last seven years,

(16:42):
six years, i guess, and until until it started getting
really bad. I couldn't walk from my dorm room to
my university classes on my own. I needed help. Going
up one flight of stairs to the class was impossible.
So I was looking for the elevator in all of
my in all of my university buildings. I wasn't feeling well.

(17:09):
So I was drinking orange juice because you know, that's
what your mom gives you when you're little, which, which
of course then I knew was was was not the
greatest idea, but so I because I had been sick,
for so long. I had had some really comprehensihensive blood
tests regularly, including one in January of the year that

(17:33):
I was diagnosed with diabetes, and which I've looked back
on now and seen that my my HbA and C
was five point two I think at that time, so
like nothing to be alarmed about in January, and all
my sort of diabetes symptoms or what I now know
were diabetes symptoms started kind of mid to end February,
and I went back to that same doctor mid March,

(18:00):
and he did another blood test, and then he went
on holidays, and so I didn't get the results back
for ten days, and then my ae C was in
the twelves and my blood sugar was, I don't know,
very high, five hundred four hundred. I was actually in
millimals at the time, so you know, in the twenty
to twenty five range, and so but it took him

(18:25):
ten days to get back to me, and he phoned
my mother, even though I was twenty one at the time,
but because he was in the same city as my
mom and I was away for university, so my mom
called me and said, you know, this is what he
has said. You know you should come back for another
blood test because it looks your blood sugar is really high.

(18:47):
It could be diabetes. But even then there was no
real urgency placed on the information. And so that was
That was maybe Thursday, and then it was the Easter
long weekend, and so my parents came to visit me
on campus that weekend saw that I was emaciated and weak,

(19:11):
and I just I hadn't even realized how, you know,
the drinking and peeing didn't even really become a thing
because I was like, of course, I'm going to the bathroom,
I'm drinking a lot, but you know, you explain away
a certain number of symptoms. I also had a friend
with type one on campus, and when he was away

(19:32):
for Easter weekend, he came back on the Sunday and
I went to see him and I said, can you
test my blood sugar? Because this is the word that's
being thrown around And I remember that one my butcher
was sixteen on his meter, so like three hundred and
something in milligrams, and he said, speaks to I think

(19:55):
what a lot of people who were diagnosed as children
and then are living through university would understand. You went, oh, sixteen,
that's not so bad.

Speaker 1 (20:03):
Interesting, Yeah, that was his perspective on it.

Speaker 2 (20:07):
Anyway, the night between Sunday and Monday, I think I
was starting to hallucinate, like I was really really going
downhill fast, and I phoned my mom and I said,
you have to come get me, and so she came
on the Monday morning and I was hospitalized on the
Monday afternoon and spent the first Yeah, I was in

(20:29):
a pretty bad decay and spent the first couple of
days in the ICU. Oh my goodness me and then
I'm thinking this thing so, I mean, it was it
was terrible. I was really sick. I was I felt
that if this is the way it's going, I'm okay,
if this is the end, Like if I die here,

(20:50):
it's like that's all right, because I can't continue like this.
And so then they gave me a diagnosis type one diabetes,
a treatment. I knew I wasn't going to die because
I knew people with type one diabetes who were living,
and so it was like, okay, I can do that, Like, yeah,
give me the syringes, give me the insulin, give me like,

(21:12):
give me the stuff, and I'll do the things. Like
it's I was I was absolutely okay with this diagnosis
because I thought this is the end of my problems,
and it was not the end. Roads so it got
it did get better for a little while, but then
another couple months later I was back in the hospital

(21:32):
for these unknown stomach issues. But they would just look
at my chart and go, oh, we've tested for everything,
and so we're not going to do any more tests,
and and so it's I still I waited another another
year was sort of a year and a half after
my diabetes diagnosis. That in the meantime, my mom was
diagnosed with celiac and I was doing a nutrition course

(21:54):
where one of our chapters was on celiac, and I'm
looking at the list of symptoms, going, I've got that
and that and that and that, and my mom was
just diagnosed and she's from the West of Ireland and
that those were all sort of in the list of
possible criteria at the time, and uh. And so when
I got back to Canada after my year away in Ireland,

(22:15):
I was I had that small bile biopsy that I
should have had a couple like three years before, and
and was diagnosed.

Speaker 3 (22:24):
Then I'm so sorry you went through that.

Speaker 1 (22:26):
I don't think I knew the extent to like just
the hitting wall after wall, and like the debilitating physical
impact that these health issues were having on you, and
the sense of not being heard, and then that hope
of you know, I've I've got a map. Now I
have a trajectory where I have information, I can go

(22:46):
and find things out, and I have medication.

Speaker 3 (22:50):
And gosh, how did you feel when you.

Speaker 1 (22:54):
Got the celiac diagnosis when that finally was kind of
pieced together.

Speaker 2 (23:00):
A little bit mixed. I mean, it does change your
life a lot. It technically, it changed my life more
than diabetes. Diabetes I didn't I didn't change my life.
I mean I had to take insulin shots and check
my blood sugar, but I didn't change any of the
things that I wanted to do or the way that
I did them, or pay more attention. But I really

(23:23):
minimize what diabetes had had had added to my life.
I guess whereas the celiac it was. I think I
think part of it is diabetes is all about the balance.
You know, a little bit of insulin but not too much,
a little bit of sugar but not too much. Whereas

(23:45):
the celiac is zero. There's it's zero gluten. It's like
really not not a crumb not, you know, I did.
I had. You have to eliminate everything, cleaning out the
crumbs from your from your cutlery drawer, and change your
toaster and all that kind of thing. So initially it
was fairly easy because my mom had been diagnosed a

(24:07):
year before me, and it was during the summer, and
I was living at home, and so the kitchen in
my parents' house was already gluten free, or for the
most part. I mean, my dad still had some bread
and stuff, but my mom had her own toaster, and
there were lots of gluten free ingredients if I wanted
to bake, and there were lots of gluten free alternatives

(24:29):
to gluten foods and stuff like that, so that it
wasn't too hard other than the fact that you know,
you sort of open a cupboard and go, oh, I
can't have that. I can't have that, I can't have that.
So there was sort of that's the difficult side of it.
But within two or three weeks, my life had entirely
changed in terms of health, like I was no longer

(24:52):
having any symptoms of celiac. There was the part so
I was sort of coming out of my type one honeymoon.
So in sort of June July of that year, I
was taking ten units of basil insulin and nothing else.
Occasionally a small correction for a meal, but it was

(25:12):
really occasional. And within a month of my celiac diagnosis,
not only had I come out of my my honeymoon
completely and was taking upwards of fifty units of insulin
a day, but I also started to gain weight, which

(25:33):
was good on a health level, didn't feel so great
on a on a human level. And so yeah, within that,
within I guess the first eight months, my A one
C had shot up. It had been in the fibes
and even at one point in the fours because I
was because I was really in my honeymoon, my A

(25:54):
and C shot up to ten percent. My I gained
thirty pounds, and so like, it changed my life in
a lot of good ways in terms of how I
was feeling, but feeling physically but not so much how
I was feeling mentally.

Speaker 1 (26:12):
Gosh, so much to go through in a a short
space of time, be a formative time. Do you think
it's driven kind of like I've heard you be very clear,
very forthright and kind of the need to advocate for
yourself when you're saying I literally can't have that fork
because at one point it touched another fork that had

(26:32):
a crumb on it. Like, how has that impacted kind
of the way you've gone through life and this drive
to not only advocate for yourself, but I think you
really have that sense of needing to create change for
other people who are dealing with whatever it is. Do
you think that's kind of led you on this par
professionally as well?

Speaker 2 (26:55):
Probably has had something to do with it. I was
always I was always on a working in the healthcare
space in some capacity. I did sort of life sciences
and university, and then I went back and did a
master's in health promotion. That part was after my two diagnoses.

(27:16):
But but I like, I knew I was heading towards
something in health before before I was even really sick,
but I didn't know what. So so definitely these diagnoses
and and the way that it has, you know, the
things that it has introduced to my life have definitely

(27:36):
shaped what I'm what I'm doing now professionally, that's for sure.
In the It's funny because I know I know that
that Living with diabetes is hard, but I find that
it doesn't affect my life as much as as the
ciliac disease in insomuch as that I can, like, I

(27:57):
don't have to talk about it. I can just do
my thing in diabetes, I can, you know, I don't.
I wear my cgms and my and my pumps and
visible if they need to be, like, I don't care
if people can see them or not. I'm not never
I've never tried to hide my diabetes. But I don't
have to talk about it. I don't have to shout
about it. I don't have to make a big deal
about it. I take you know, I'll go out for

(28:18):
dinner with friends or or colleagues or in a you know,
professional sending where I don't know anybody, and I just
now just take out my phone, do my bullets and
put it away. But even at the time when I
was doing an injection under the table, like nobody noticed
and I could just do my thing and it was
and live my life with the celiac, I have to

(28:39):
talk about it, especially in social settings where there's food,
and I hate that like that that bothers me more
than way more than than the than the difficulties that
that diabetes brings to my life, so that I you know,
when I'm when I'm at a restaurant and I have
to explain Some places are getting better these days, but

(29:01):
even now twenty seven years later, there are loads of
places who don't understand and who you know, I have
to explain why I need this and why it's so important,
and no, you can't just take the croutons off the salad,
and you know, things like that, and I hate it.
I hate that I have to that I have to
be vocal about it for myself. It's funny because as

(29:22):
you're saying, like the other part of your question was
about four others. I can absolutely be vocal about the
needs of people with product conditions in my work in
the online space and things like that, But being vocal
for myself at a restaurant when you know, everybody just
wants to order their food and I'm causing problems. I

(29:43):
slow down the order for our table. I might it
might mean that another table orders before us, and so
that slows down everything. I hate bringing the attention to
myself in sort of that aspect of it.

Speaker 1 (29:58):
This episode of Type one on one is sponsored by Insult,
the makers of omnipodtube free insulin pump therapy. I've personally
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and using Omnipod five automated insulin delivery has improved my
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(30:19):
no multiple daily injections. How well, Omnipod five automatically adjust
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allowing life outside of type one diabetes to get bigger.
If you want to know more, head to omnipod dot com.
It sounds quite tiring when you say I have to

(30:41):
advocate for myself here, here, and here through the celiac.
What drives you then to talk about it on behalf
of other people or change things for the better for
other people, Because when I've been in diabetes groups with you,
I have been blown away, like I was just there
like little twenty five year old Mela la la la,
do my injection, not having this kind of I don't

(31:03):
think I developed my own advocacy really then. I was
just talking about my real life experiences as a twenty
five year old, and you came at it with such
a different lens, which is why these groups are so
incredible and important. I think to be able to bridge
that gap from what's being offered and what people's needs
are what keeps you pushing on in terms of speaking

(31:25):
your truth to make things better, you know, when this
is quite exhausting for you to kind of move through
in your own world.

Speaker 2 (31:34):
I think there's a lot of things. I think part
of it is really simply the community that I found
in other advocates, And in that I include advocates like
the first gin that I met ten years ago or
whatever it was, that who don't necessarily who haven't taken

(31:57):
the step back from their own care. But it's so
it's mixing all of the different levels of implication, whether
it's implication in your own health or implication in the
healthcare system at a wider level. So yeah, I think
definitely there's there's the community aspect of it. So there's
we know very well about what the community brings to

(32:20):
each of us when we live with diabetes, this whole
diabetes online community or in real life community. But I
think the same is true in advocacy, and I think
advocacy would be a lot harder if if again, you're
all by yourself doing it. So I think that's probably
the number one or the like the first thing that
comes to my mind, and a part of it is

(32:42):
seeing how the system works and doesn't work, and and
what how important it is to have people with lived
experience come to the table and and be sitting at
that table. We've seen so many examples of where you know,
a company has an idea and so then they come
to maybe in the best case scenario and until more

(33:05):
recently but for a long time, the best case scenario
is they come to a group of people, let's say,
living with diabetes, and they say, we have this idea,
what do you think? Can you give us some feedback
on our idea? And so then they get that feedback
from their focus group or whatever, and then they go
away and they work on their idea with or without
some of the comments that were brought from the group

(33:26):
of people with lived experience, and then they make their
device or their software or their you know, whatever it
is that they're they're building, and then they bring it
back to the community and said, we'll try it out
and maybe it really works really well in your life,
and maybe it doesn't answer the questions that you have
or the needs that you have. But it's made already

(33:48):
and so it's it's really hard to change. I mean,
there can be other iterations, but they bring you the
final product. And so some of the work that I'm
doing as well in my work is making sure that
people with lived experience are at the table the entire
way through the process, and so little iterations can be

(34:10):
made all through the building of whatever whatever device or
whatever software or whatever tool is being made, so that
so that the end product is actually something that is
going to be useful for the end user, and whether
that user is the patient and or the healthcare professional,

(34:31):
because often there's a there's a mixed use in a
lot of the tools that we use. So I think
it's so important to have that, to have anybody who
has a stake in whatever is being made to be
at that table. And for so long, the only ones
who have been excluded from the table are the people
with lived experience, and so we need to be there

(34:51):
as well.

Speaker 1 (34:52):
Yeah, incredible from a practical point of view, Am I
right in saying this is again was years ago.

Speaker 3 (34:58):
I can't even remember. I ate for breakfast yesterday.

Speaker 1 (35:01):
So the fact that I remember these things that you
said says a lot about you.

Speaker 3 (35:04):
I think you've said.

Speaker 1 (35:05):
To me before or in a group of environment maybe
that diabetes impacts you more, but celiac impacts your family more.
Or maybe you said celiac impacts your family way more
than your diabetes does.

Speaker 3 (35:20):
Would I be correct in saying that, Yeah.

Speaker 2 (35:23):
My diabetes doesn't affect my family very much. I mean,
my husband will bring me a glass of orange juice
occasionally when I need to. When I took a massive
overdose of insulin in my sleep a couple of years ago,
he saved me, and so I'm sure that affected him.
But when my kids were little, and I picked them

(35:44):
up from school and nursery, and it was, you know,
right at sort of dinner time, and so I'd try
and get them home and get dinner on the table,
and as my blood shirg was crushing sort of that
end of the day for six pm crash, and so
probably I yelled at the more or at that time,
if you know, I wouldn't have yelled at them as
much if my blood sugger hadn't been low. So I mean,

(36:05):
it's not that diabetes doesn't have an effect on my family.
But for the most part, it's my thing and I
do it. And you know, again, they know that I
have it, They know that I have to take insulin.
They see what happens when my blood suger goes low.
And sometimes I say, like, just give me five minutes
to you know, to get back to reasonable levels. But

(36:26):
but yeah, definitely celiac. I mean, it's it's at every
diabetes is every minute of every day, three hundred and
sixty five days a year. Like I don't want to
minimize the what it is and the work that it is,
and it's but it's mine, whereas the Celiac does have
that more sort of outer like that I don't know,

(36:48):
it goes out of myself because I have to impose
on others to either eat the way that I do,
or to make something for me if I'm going to
a friend's house, or to order something special, or to
ask for, you know, specific things to be done to
my food in a restaurant, and so they're there. Yeah,
it's it's only at every meal, but it's at every meal,

(37:11):
and and you know it includes you know, not dipping
your butter knife back into the butter after if you've
put it on your toast. I don't care that they
have gluten toast in my house, but I need to
keep the butter clean.

Speaker 1 (37:27):
Interesting, And I'm wondering from a practical point of view,
because correct me if I'm wrong, But I believe there
is a link between celiac and type one diabetes. So
there may be other people listening who are in a
position similar position to you. What practically helps when you
are trying to explain things, whether it's to your closed

(37:49):
circle or in a restaurant, just for maybe other people
to take away if they're if they're newer into this journey,
or they're not.

Speaker 3 (37:56):
Used to speaking up. What has helped you as you
move through this?

Speaker 2 (38:02):
It's a good question. Yeah, there definitely is a link.
I think it's I think statistically it's about ten percent
of Type on have celiac, so which is significant. What
has helped me? I mean it's it comes back to
knowing diabetes and knowing because all of all of my

(38:24):
flexibility is in diabetes. I don't have any flexibility in celiac,
and so it's it's knowing your diabetes as much as
possible so that you can adapt your your blood sugar,
your insulin needs, your your temp basals, your whatever, adapt
your diabetes because you can't adapt celiac if it's you know,

(38:48):
other than not eating sometimes, which is like terribly unfortunate
if it but it does happen sometimes. But even in that,
like if you're in a situation where you can cannot
eat anything, you have to be able to adapt your
diabetes to go with that. I remember once I was
on it. I don't think I was very long diagnosed

(39:11):
with either. It was maybe the very early two thousands,
and I was on an airplane with my mother, and
mothers can be, you know, quite the advocates when when
they need to be, even if you don't need them
to be, And they didn't have any gluten free food
on the airplane, and my mother got in such a snitch.
She said, well, my daughter has to eat because because

(39:34):
she has diabetes. And I just thought, Mom, I can
deal with my diabetes like I don't. We don't need
to make a big deal of this. If I don't eat,
I take lessonsulin. I was already on a pump, like
I knew what to do to adapt my diabetes to
the food situation that was in front of me so,
and it can be either, you know, the situation where

(39:55):
there is no gluten free food and so you cannot eat,
or the fact that gluten free let's say, substitute foods
pasta and things like gluten free pasta has a far
higher car blowed than gluten pasta and so and so
you have to adapt the amount of insulin that you're
taking based on the amount of carbs that are even food,

(40:18):
and even those earlier I talked about the you know,
the thirty pounds that I that I gained, that I
that I put on after diagnosis, And I speak in
pounds because at the time I was in Canada, and
now I don't even know what that is in kilos,
but now I only know my weight in kilos. But anyway,
that was partially because I had not been absorbing my

(40:41):
food for so long that suddenly, as my gut healed,
I was able to absorb the food. And so it
was my body had been in this sort of starvation
mode for such a long time, and so any calorie
that I even looked at just jumped right in. But
that also meant that I needed to adapt my insulin

(41:03):
injections at the same time, which is also why my
blood my my A and C went from five to
ten within a year, because like that, that's what I
could adapt, whereas I couldn't adapt what I was eating.

Speaker 1 (41:18):
I think people listening will have a ton of things
that they wish that other people knew about type one diabetes.
What's something that you wish people knew about celiac that
generally they don't understand.

Speaker 2 (41:33):
That's a good question. I mean really that it's like
it's it's zero, it's down to the crumb, it's down
to the to the you can't dur the pasta pot
with the same spoon between the gluten pasta and the
gluten free pasta. And for the most part, it's not
a problem in my life. But it's anytime you go out,

(41:54):
anytime somebody else is cooking for you, that it becomes
a problem. And anytime, you know, if I go to
a restaurant, I have to have faith that they're they're
not going to use the same utensils in the kitchen
for for one thing, and another that they're not going
to you know, break bread or cut bread over my

(42:15):
plate while they're going to be putting it on somebody
else's plate. Things like that. I was at a when
I worked in the hospital and when I was eating
sometimes at the at the hospital canteen, and there was
one day that I had taken rice I think, or
maybe it was the vegetables, and I found a piece
of pasta in the middle of it, just because you
know the in in the canteen setting there, you know,

(42:36):
everything is right beside each other, and so things drop
into the other bowl. So, yeah, it's it's sort of
that level of understanding, and especially of people who work
in the food industry, that's where that's where the sort
of the biggest risk is for me, and it's where

(42:57):
where I think people are not educated at all.

Speaker 1 (43:02):
Yeah, And as someone who doesn't live with Celiac, I've
seen a lot more availability of gluten free foods, but
my perception is with that there's a lot of people
kind of in this, Oh, I have a gluten intolerance,
so I'm choosing not to eat gluten. Like, can you
speak to that a little bit in terms of whether

(43:22):
it's helped or hindered the gravity of living with Celia
as a person living with celiac.

Speaker 2 (43:29):
Yes, definitely. The short answer is both. It's also it
also depends on where you are. So I know that
you're from the UK and that you live in Spain,
and both of those places are fantastic for gluten free food.
I live in France and France is terrible. Paris not
so bad. I've got a gluten free bakery down the

(43:49):
street from my house, and there are more gluten free
resources in Paris than probably anywhere else in France. But
there are very few just regular restaurants that would have
gluten free options and have the sort of the the
awareness or the you know, the know how to tell

(44:09):
you what on their menu is gluten free. So that said,
so that's the sort of the the where you're living.
The fact that gluten free became sort of a fad
was was good generally for people being aware of the
word and for pushing industry to provide more choices. I

(44:32):
talked about the gluten free bakery down the street from
my house. I'm sure that ninety percent of the people
who go there do not have celia, because it really
is like people people see it as healthy, which I
mean whatever, I don't, I don't. I'm gonna right now,
I'm not gonna have an opinion on that. You can

(44:52):
I mean, it's like vegetarianism. You can you can eat
a completely vegetarian diet and be very healthy, or you
can eat potato chips all the time, and it's also
vegetari Celiac is sort of the same. You can eat
healthy Celiac and you can eat really unhealthy ci gluten free.
So I think in some ways it has helped because
there are more products, there's more awareness, there's more there

(45:15):
are more places that are like more sort of one
hundred percent gluten free places, but also more sort of
regular restaurants and regular places that have gluten free options.
So in that part it's good. But the sort of
the negative of the flip side of that is that
people think that they know what it is. And then
it comes back to your question from earlier where where

(45:36):
it's sort of the one thing that I wish people
knew and is, and it's it's that like I can't
take the croutons off my salad or or the you know, whatever,
it has to it really has to be as gluten
free as possible if I'm eating in a restaurant, and
so it's, yeah, it's the it's the misunderstanding and when
people think they know but they actually don't. That I

(45:57):
think is the is the dangerous side of the fad
or the sort of people rolling your eyes I had.
I don't get glutened very often, and a couple of
years ago, i'd gone out for a nice dinner. It
was our wedding anniversary and and I usually when you
go out to a nice restaurant, they're pretty capable of

(46:19):
making sure things are gluten free. And there was one
thing that came to the table that had some kind
of bread item on it, and I had to send
it back to the kitchen. So that was already sort
of a first red flag, and I told them, you know,
you can't just take it off. I need a whole
new plate. And it's okay if it takes longer, like
I'll live with that, And so it came back. I

(46:42):
trusted them, But then in the middle of the night,
I got really, really sick and I knew it was gluten.
And then the following night, I was also going out
for dinner. It was a planned thing with colleagues, and
I don't usually go out for dinner every night, but
I wasn't feeling great because I had been sick the
night before. I was end, but at like it sort of,
So that was the physical side of it, but also

(47:03):
my confidence was a bit shot. And and it just
so happened that the restaurant that we went to the
next night, when I said, you know, I need whatever
it was, to be completely gluten free, he didn't really
make fun of me, but he poked fun at the situation, like,
you know, what'll what will happen? Will you will your
head blow up or something? And I and I couldn't

(47:25):
take it. You know, Normally, I'm absolutely fine with whatever comments,
you know, I'll try and do my best to like
just just dampen the situation or explain what it really
means or whatever the situation is, whatever the situation calls for.
But but I just that time I could not take
it because I had been so sick the night before.
And yeah, it was that was rough. But I'm rarely

(47:48):
in situations like that, so when they do occur, like I,
it hurts.

Speaker 3 (47:52):
Yeah.

Speaker 1 (47:53):
Yeah, and it sort of speaks to this constant like
trudging on, doesn't it that. I think a lot of
people listening who live with taitwan diabet can relate to
it in a different way. Yeah, absolutely, what makes you
feel calm, safe, switched off in you know, in relation
to having to live kind of with this this god,
with this awareness, with this perception of everything that's happening

(48:16):
around you. When you are eating in a restaurant, for example,
what helps you kind of just dial down that noise?

Speaker 2 (48:24):
I think it's probably probably eating in places that I
know are safe is the easiest, and that is getting
easier for sure. So yeah, it's I when I when
I don't have to think about it, when I know
that where I'm eating they're going to take care of
me for either because it's one hundred percent gluten free place,

(48:44):
or because I've been there before and I know what
I can order and and you know I've had this
the conversation with them before or whatever. So it's yeah,
it's it's making it's that, it's it's like pre work
on my part to make sure that the place is safe,
that I've chosen, the restaurant that the group is eating at,
or whatever. In that way, it's a lot like diabetes.

(49:06):
And it comes back to sort of the very first
conversation we had about about before being on a closed
loop system, changing your your basil rates, either lowering them
or or boosting them up after a meal or whatever
what I used to do with my diabetes. I always
thought that if I, if I do a little bit
of work upfront, then then it makes it so much easier,

(49:28):
Like if I if I lower, if I lower my
basil rate, I'm not going to go low and so
like it makes that future easier. If I pre bowl
is my meal, I'm not going to go as high
after after eating, and so I don't have to deal
with because then you're you've got the sort of the
health consequences they they you know, two hundred and fifty

(49:49):
bell sugar or whatever and uh, but also the emotional
of like your you have to work at at getting
your blood sugar back down again. So the upfront work
lessens the at the time work. And I think it's
the same for for Celiac. If I do the work
of finding the gluten free restaurants or the you know,

(50:09):
the places that I'm going to feel safe eating, or
that I work with my friends when they're going to
be cooking for me, that they know what ingredients that
they can use and things like that, it just makes
the moment that much easier to deal with.

Speaker 1 (50:22):
Yeah, so you can be more present, I guess, and
you're making decisions that future you will thank you for exactly.

Speaker 2 (50:28):
Yeah, and I've had more on the diabetes side of that.
I've had healthcare professionals say to me before, but Andrew,
you're so involved with your diabetes, and I'm thinking, I'm
not involved with my diabetes, Like, yeah, I do a
bit of work, but I do it so that I
don't have to be involved with it, like I, you know,

(50:48):
I do the pre bowlis or I I you know,
tinker with my basil rates because I don't want to
be involved with it later. And so all of that
little bit of work upfront, including the you know, the
reading and listening to podcasts and meeting community and stuff,
I do all that so that it'll take up less
space in my life. But I guess there are especially

(51:10):
I was working with a doctor with a dipatologist at
the time, and so he could see the little tinkering
that I was doing, and he would never he was
also a dipatologist for teenagers, so he would never impose
that on his patients, but he saw me doing it
and he thought it was you know, I was making
it more work for myself and like that, but I

(51:32):
don't have to do the work of bringing down the
blood sugar to er it after the meal because it's
already taken care of with the pre bowlers or you
know whatever, other whatever, other tinkering.

Speaker 1 (51:43):
Yeah, yeah, this I think is a really interesting perspective
for people to hear because I guess I learned it
from you. But that point that my consultant made, I
didn't realize how much impact this had. Like, you know,
I knew obviously that comment had stuck with me, but yeah,
that comment that my consultant made, like you're kind of
acting like a pancreas, like tweaking this.

Speaker 3 (52:03):
All the time.

Speaker 1 (52:03):
She was like, there are worlds where I would not
advise you to do this, but she was like, you're
clearly fine. It's clearly working your time and range is
I'm really happy with it. And yeah, like I guess
that's the road I've been on a little bit of Okay,
I'm doing this now. One it's becoming a bit more
second nature because the more you do it, the more

(52:24):
you understand about yourself.

Speaker 3 (52:25):
And at that point, it was a couple of presses
of a couple of buttons.

Speaker 1 (52:30):
But to your point, like the benefit it gives me
long term, not only in the hours after the meal,
but hopefully in the future, like I could start to
see that being realized. So I think, I mean, you're
basically my diabetes very god brother, is what I'm saying here.

Speaker 2 (52:50):
And I get that not everybody should be. I mean,
I've seen people call that obsessive and point out the
dangers of being too obsessive about your blood sugar. And
I'm my blood sugger is by no means perfect all
the time. It's it's not bad. I use a closed
loop system. I you know, I'm always trying to kind

(53:12):
of kind of tweak things, as I said, ahead of time,
so that I don't have to do the work. I
tend to call it lazy, but but I've seen it
because really I don't want to do the work, so
I you know, I do a little bit of work
upfront so I don't have to do a lot of
work on the back end. But I've seen definitely seen
people call it obsessive and dangerous to to to care

(53:34):
that much about your blood sugar. And I maybe it
depends on the person. Maybe it depends on your personality
or you know, other things that are going on in
your life. But I don't think it should be dismissed
because it is. It's possible to have decent results by
doing a little bit of work upfront.

Speaker 1 (53:52):
Yeah, and so I want to touch on moving countries,
but just before we do, with that in mind, like
moving on to a closed loop, how was that for
you in terms of, oh, I actually have to do
less work up front? Now, how did that make you feel?
Given these different kind of perspectives on how much thinking

(54:13):
you have to do upfront and how much work you
do up front to benefit you later, what was that like?

Speaker 2 (54:19):
I mean, I think it sort of follows along the
same lines because I went straight to a DIY loop.
I mean, six years ago there were no commercial systems available.
It does require a bit of tinkering up front on
the DIY systems, for sure, it does, and getting your
settings right and things like that. But I was really
excited to move on. I've always been happy to use

(54:42):
the newest technology possible. I've been on a pump for
for twenty five years. I started using a CGM in
twenty thirteen, so twelve years of that, and so yeah,
I've always looked to use whatever technology I can, and
so I was happy as soon as I had access

(55:03):
to the pieces that I needed to be able to
build my own loop, I was really happy to do that.
And even if it did take quite a bit of
reading and a bit of tinkering with the settings so
that I really understood the system so that I could
make it work for me and not me having to
work for it. So for me, it was just a
natural and natural progression in what I had always done

(55:26):
with diabetes. It's a little bit weird to do less work,
but it was certainly very welcome. So once I had
the settings down, it was the Yeah, the work was
done with like sort of more on settings and less
on the before each meal or before each low or whatever.

Speaker 1 (55:45):
Did you ever have issues with trusting the tech just
with the view that you did set up yourself? And
I think people's journey with technology is obviously very personal
and unique, but there is an element of trust that
you have to put in these machines.

Speaker 3 (55:59):
So what was your experience of that.

Speaker 2 (56:02):
I think I had done enough reading ahead of time,
and I knew enough people who were using it that
I never had that trust issue. I could say the
same thing for when I went on a pump in
two thousand people. I know people who are really hesitant
to use pump tech technology at a time, like you know,
what if it dumps all three hundred units of insulin

(56:22):
into your body? But I had read enough to know
that a it wasn't going to do that, but b
to know all of the good things that it was
going to bring me, and you know, people even the
question of you know, I don't want something attached to
my body, I don't want to wear the technology, which
I don't think is as much of a problem today

(56:43):
with because CGM is so wide they adopted, but at
the time it certainly was like a big question for people.
And most of the the accounts that I had read
about wearing pumps is, yeah, it's a bit weird for
the first couple of weeks when you're trying to figure
out where to clip it on or you know, how
to put it in your pocket, how to hide it,

(57:03):
how to how to wear it. But within two weeks
you get that figured out and and all of the
benefits of the pump far away any of the little inconveniences.
And I knew from reading all of that that that
would be the same for me. And it was. It
was exactly the same for for going on an open
source closed loop. I had read all the documentations, so

(57:24):
I knew how to use the system before I actually
had it on my phone. And the same thing, I
had read enough accounts of people who were using it
to know what the benefits were and to know, you know,
if I encountered any stumbling bullocks, A how I could
fix them, because I, you know, I had already encountered

(57:44):
other people encountering those problems, and B where to turn
if I couldn't fix them myself and the community It
still will always come back to that. The community online
is unbelievable in the support for open source closed loop.
It's funny because Facebook is no longer sort of the
main social media for most people, but that's that tends

(58:05):
to be where the where the looping support lives. And
you know, you've got Facebook groups of tens of thousands
of people from all over the world, and so if
you write a question, you are likely to have an
answer within ten minutes from somebody in the US, or
in New Zealand or you know wherever, and and I

(58:28):
have so that the few times when I have had
technical questions because there was, you know, something that I
encountered that I didn't know exactly what to do. I
always had an answer within ten minutes, which you would
never get from your endocrinologist when you're or even so,
in France, we have sort of a third party provider
for all of for pumps and cgms and closed loop systems,

(58:51):
so you can you can phone them twenty four to seven,
but you I don't know. It's it's a little bit
harder to phone the nurse in the middle of the
night rather than to get on the Facebook group in
the middle of the night. And so, yeah, I've never
ever had an issue, and and I knew that I
wouldn't have an issue because I had read about other people,

(59:12):
you know how how they've figured out any problems that
they had, So it never bothered me.

Speaker 3 (59:17):
Are you still on open source now? Are you on
an official.

Speaker 2 (59:20):
No, I'm still on story. I've recently switched from loop
to trio interesting and very much like I switched actually
when we saw each other a month ago at ATTD
I switched a couple of days later. Oh, and has
that been It's been fantastic?

Speaker 3 (59:37):
Okay, yeah, it's.

Speaker 2 (59:37):
Been really really fantastic. There's still some you know, it's
it's a new algorithm and and a new app, and
so there's always stuff to learn. But where there were
a few of us who who switched to Trio at
the same time, and so we've got like a little
group of you know, we're all new at this and
so we can support each other. But also we were

(59:58):
we were onboarded I guess by some really really experienced people,
and so we've got that little group who kind of
helped us start Trio a month ago, and then there's
the wider global group of people using the apps. So yeah,
it's fantastic. Oh yeah, I'm I'm got a higher time

(01:00:18):
and range, a lower time below range, slightly higher average
glucose level on Trio than I did on Loop, but
I'm still working on that.

Speaker 1 (01:00:26):
So I'm just curious, what is there anything that's prevented
you going on the kind of official channel into clothed
loop now that it is becoming more available.

Speaker 2 (01:00:36):
Definitely not. I think my undercnologists would far prefer that
I use a commercial closed loop. She doesn't really understand
the open source and she's afraid that she can't help me.
But it doesn't bother me that she can't help me
because I have the help that I need. She I
switched interercnologist a couple of years ago, and so I
had to tell her this is what I use. And
she hadn't yet done the training, even on the commercial

(01:00:58):
closed loop system, so she was she was feeling really
uneasy with me using not only something that wasn't official,
but wasn't that that she didn't know that she wouldn't
be able to help me on. But then as we've
gotten to know each other over the last couple of years,
she has she has tried, initially tried to push me
towards you know, now this system is available, oh now

(01:01:19):
now that the tubeless option is available if you wanted
to stay tubeless. But I think she's realized now that
I have no intention of changing.

Speaker 3 (01:01:28):
And what is driving that.

Speaker 2 (01:01:30):
Maybe it comes back to being a tinkerer and I
used to tinker with my old pumps and this is
how I can stay stay tinckering. It's a lot harder
to tinker with the with the commercial systems that are
available because you don't have a lot of options to
tinker with, and you definitely can with with the open
source options. Sometimes it's you know, it can be a
bit annoying to to do all the tinkering that you

(01:01:52):
need to do because there are so many buttons and
knobs that you can turn that that sometimes it can
be a little bit confusing, or what do I need
to change in this instance to have a different outcome?
But I like the fact that I can tinker. I
like the fact that I can push some buttons and
turn some knobs and have the outcomes that I'm looking for,

(01:02:15):
which are not necessarily exactly the outcomes that my endocrinologist
is sort of willing to settle for. I guess interesting.

Speaker 1 (01:02:26):
So I want to touch briefly on moving abroad with
chronic conditions and moving through different healthcare systems. It's worth
pointing out that, as you mentioned earlier, you did not
let your diabetes diagnosis prevent you from figuring out how
to go traveling just months later in the nineties, you know,
a time when we didn't have social media or smartphones,

(01:02:50):
I believe. Yeah, So I'm just curious as to maybe
it's this perspective that you know, all perspective is relative
right to your own experience. You have, Celiac, that we've discussed,
you know, in terms of how that affects you, and
then your diabetes being something that once you were diagnosed
you actually felt a lot better about in terms of

(01:03:12):
your health. So was there ever any question that you
were or were not going to go to Europe? And
then in terms of moving abroad, can we speak just
a little bit. I know we're going over time here,
but just a little bit about your experiences of switching
up your healthcare and things like that.

Speaker 2 (01:03:30):
Yeah. Indeed, when I was first diagnosed, I think again
it was my mum who brought it up to my
first ender chronologist saying, you know, she's she's supposed to
be going to study abroad for the next year. And
I just thought, you know, Mom, shut up. I'm going like,
why are you even bringing this up? And but my

(01:03:51):
intercronologist was fantastic and said, not, of course she can
go away. She can go abroad to study, like that
shouldn't be an issue at all. And I was going
to Northern Ireland. I was in the UK and on
you know, on the NHS, and so it was I
think that probably made it indiar easier than going to
a place, you know where where the healthcare system wasn't
quite the same, so that that was really easy. I

(01:04:13):
was using regular and NPH insulins at the time, and
and uh, and so I could I just needed to
to see the doctor on campus and get my prescriptions
and then I could go straight to the pharmacy and
they would give me my insulndon. So there was there
that was super super easy. And I wasn't using any
technology other than I might have had to change my

(01:04:36):
blood glucose meter because it wasn't the same strips in
the UK as in Canada. But but it was. But yeah,
it was. It was really seamless. It was. It was
super easy to do.

Speaker 3 (01:04:48):
And then so.

Speaker 2 (01:04:50):
While I was in Ireland that year, every when I
came home, everybody said, did you meet a nice Irish boy?
And I said no, but I met a nice French boy.
And so I was back in Canada for a few years.
We both went home to finish our schooling and start working.
And then a few years later we had seen each
other a couple more times that well, this is it's
not over. What should we do? What should we you know,

(01:05:11):
how should we move forward? And I had gone back
to school in Canada and he was working in France,
and so I said, well, listen, instead of looking for
a job when I finished school, I in Toronto, I
will look for a job in Europe. And first I thought,
you know, Paris is that that's maybe too much of
a leap, like we don't know where this is going

(01:05:33):
as a relationship, so you know, maybe I should go
to Doublin or Brussels or something. And in the end,
it was just far easier just to come straight to Paris,
and I did, and now we've been married for eighteen
years and have two kids, and so.

Speaker 3 (01:05:48):
That I love it so much. I love a love story.

Speaker 2 (01:05:54):
It's kind of nice when people often ask me, like,
how did you end up here? It's nice to be
able to say love every time. Yeah, I get that
question a lot. You know, why did you move to
Spain for a job of for love? And I'm like, nope,
and no, I think that's great too. I mean that
really shows a lot of resolve and thank you.

Speaker 3 (01:06:16):
Yeah, back to you. I want to make another episode
on your love story the other time.

Speaker 2 (01:06:21):
So moving to France was a little bit more complicated
because I had to get onto the French healthcare system.
Once I was on, it was super easy, a little
bit like the NHS. Everything is covered one hundred percent
down to the batteries in my insulin pump. Like everything
was covered, but it was getting onto the system that
took a few months. So I had come over with
a few months of supplies and then I phone at

(01:06:46):
the time, I phoned my insulin pump company, which is
completely not the thing to do in France because there's
a real separation between industry and patience. But I didn't
know who else to call, and so I phoned me
at the time and said, I'm looking, I've just moved here,
I'm looking for an endocrinologist. They gave me the interocrinologist
who who, or they gave me the name of an

(01:07:08):
endocrinologist who happened to be sort of a ten minute
walk from my house and I think probably prescribed the
most metronic insulin pumps in France at the time, And
so it worked out well for both of us, and
that once I had seen the endocrinologist and he had
given me some free samples of things that he had
stopped up in his office, he was able to sort

(01:07:31):
of do the paperwork to get me onto the French
healthcare system, and from there it's been really smooth sailing.
So yeah, that it really I mean, it takes an organization,
it takes a lot of phone calls. It took a
few times coming out of the the scurite social offices
where all the paperwork has to be done. Came out

(01:07:52):
of there a few times in tears. Brought my then
boyfriend at the time, because like, I need a French
person here to back me up, because my my own
advocacy is only going so far. I don't know the system.
I'm you know, I spoke the language, but it was
still a little bit rocky. I didn't know all the terminology,
and but once it was finally in place, it was

(01:08:12):
really smoke sailing. Yeah.

Speaker 1 (01:08:15):
I just think it's inspiring for people to hear that
these challenges can be overcome.

Speaker 3 (01:08:20):
And it doesn't mean that easy.

Speaker 1 (01:08:21):
It doesn't mean it's always you know, ideal, but it
is our reality and there are different ways of tackling that.
And I think, yeah, I'm sure the listeners can understand
how and why I've learned so much from you, even
though we actually haven't.

Speaker 3 (01:08:38):
Been in the same room for so many years.

Speaker 1 (01:08:40):
But certainly I think you were one of the first
people that I understood that there were different ways of
doing this, there were different motivations behind the decisions that
we make around taking care of our health and how
much that actually digging into a bit more around healthcare, bodies, technology,
any and all of it, community can pay off for

(01:09:04):
future you.

Speaker 3 (01:09:05):
So thank you so.

Speaker 1 (01:09:06):
Much for sharing your story or experience, your wisdom, and
thank you for being my.

Speaker 3 (01:09:10):
Diabetes very godmother. I'm just going to call you that
from now on.

Speaker 2 (01:09:14):
I am happy to have that rule jin. Thank you.
I hope you.

Speaker 1 (01:09:20):
Enjoyed this episode of Type one on one. Please remember
that nothing you hear on this podcast should be taken
as medical advice. I'm definitely not a healthcare professional.

Speaker 2 (01:09:31):
If you like what you.

Speaker 1 (01:09:32):
Hear, hit subscribe and do leave a little review on
iTunes if you have time. It really helps to spread
the word about type one diabetes. And thank you so
much for listening.