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Wednesday, December 28, 2016

I can't tell you I'm fine. I can't give you the answer you want to hear.

I'm sorry that, earlier today, when you asked how I was (like you always do), that I couldn't just say 'I'm fine'.

I know that's what you want to hear. It's what I should tell you because you don't need to worry about me and it's the easiest way to explain how I am.

But today it just wasn't true enough. I know you want and need to hear that I am fine, but I can't lie to you either.

My blood sugars are fine. My A1C is fine. My actual physical control is fine.

But I'M not fine.

I'm tired. I'm tired of dealing with this, I'm tired of trying to describe 'fine'. No, that low is fine, it's under control. No, that high is fine, it'll come down soon. No, that low's not fine, and I know the rest of them were, but this time it's not, okay? But don't ask me if I'm okay, because I'm not, just don't ask me to do anything. No, I can't tell you what 'in-range' is because I'm drunk and you're drunk and despite that I know what I'm doing and I just want to be a normal teenager for once, okay? I'm tired of seeing the shock on people's faces when they realize that I have to account for every morsel of food I put into my mouth. I'm tired of trying to describe why this is hard to handle. I'm tired of trying to explain, to myself and to others, why the comments they make hurt. I do get grumpy when I'm low. So why does someone else pointing that out make me mad?

Seven years is hitting me really, really hard. I hate the thought that this is going to be a part of my life all through school, and all through my career, and someday I'm going to be a mum who's part robot. And in twenty and twenty-five and fifty years I will still have diabetes.
I don't know what's changed. I mean, everything has changed, but you'd think that seven years into diabetes and eight months into working with a new health care team I'd have it sorted.

I'm scared. I'm scared of complications. I'm scared that I won't wake up from a low. I'm scared that I won't feel a low and that the situation will go downhill fast. I'm scared to ask for help. I'm scared that I will become so reliant on a CGM that I'll lose all the understanding I have of myself. I'm scared that I'll never work up the courage to take a pump break like I so desperately want to. I'm scared that I'll spend so much time thinking about diabetes that I'll miss out on life. I'm scared that I will continue to test upwards of fifteen times a day and I still won't be able to figure it all out.
Mental health in nursing students is already not good. Throwing diabetes into the mix doesn't seem like a good idea. I am scared that mental health issues and potential crises lie in my future, and I want to prevent them to the extent that I am able to. But I am also scared of a) admitting something's wrong, b) asking for help, and c) trying to deal with something that could very well just be stress and life.

I'm not fine. I'm not sure that I'm able to admit that out loud to a person yet, but I think admitting it to myself is the first step.

Tuesday, December 27, 2016

I've said all this before but it's crushing me.

This is not burnout. I think this is just overwhelmedness.

We'll see what happens when I take off the CGM. But that scares me too because having this constant flow of information, of knowing where I'm at, and knowing that I'm protected if I drop or skyrocket and don't know has been amazing. But also, wearing it is tough as balls. I can't decide if it's worth it. I think it is if it stays accurate (#nottoday) and maybe put it on my arm.

I keep experiencing what I think is close to anxiety attacks because I'm going to have this forever and I can't keep doing this every day. My control is good - it's really good - but it's not good enough. I'm back in that first-two-weeks-post-diagnosis-space where every number has to be perfect. I'm doing pretty well on that front, but it's Christmas and remembering to pre-bolus (which is working wonders for me) is hard. Also, apparently stuffing one's face full of junk food - even with insulin - is not a good way to deal with a bad day at work. #18.0@3AMfornoapparentreason

I can't do this my whole life. I can't wear a pump and a CGM forever. But I can't not, because I won't be able to handle the lack of control.

I need a better A1C. 6.8 isn't where I want to be, but nobody understands me because it's a good result.

I'm an A+ student and I'm not okay with having this thing constantly that doesn't consistently return an A+ result.

There's too much thinking. There's not enough talking. I felt so diabetic all of today. I don't think I ever stopped thinking about it.

I can't keep reading things because they just add to the overwhelmededness. This is bigger than I ever thought it was and I think not having school is leaving too much room for thinking.

I don't know who to talk to. I don't think the nurses will understand. I don't have an appointment with my doctor until March. I'm scared to try and get an appointment earlier. I know I should. Maybe.

I just can't keep handling this.

Friday, December 23, 2016

Always is a really scary long time.

I have a lot of thoughts and I don't like any of them and I can't talk to anyone about them because I don't want to be told to feel better. I need to figure out these feelings but I don't know how. I need someone who I can talk to without limit or thought who can listen and understand (REALLY understand).

I don't know if it's because I'm wearing a CGM in addition to my pump. I don't know if it's because I spent all day looking through old family photos. I don't know if it's because it's almost Christmas and also almost New Year's and things always seem to change when that clock hits midnight.

Maybe it's because I can see both my sites and it breaks my heart that if I go ahead with a CGM, which I'm sure is the right decision for me because I have become way less obsessive, way more on top of things, and feel so much better about where I'm at all the time, then I will have to wear these two sites for maybe the rest of my life. I'm going to be an adult and wearing $10 000 worth of medical devices every single day and night. (Maybe it's because I'm realizing how much this damn disease costs.) Part of the reason I wanted to go back on pens was to not have to wear these things, because maybe part of me thought that not wearing them would make it go away. Well obviously it won't, and as my doctor so frankly pointed out, it will actually make it go away less because control will not be as good and way more thought will need to be involved.

Maybe it's because there are pictures of me when I'm a baby with my aunts who also have Type 1 and that makes me incredibly sad because not only is there nothing to see (no pumps, no CGMs, no visible blood sugars), but they've been dealing with this for SO LONG and I can't even begin to understand how they've done that. I don't understand how I've already dealt with this every day for seven years. I don't understand why it's only sinking in now that this is a forever thing. It's never going to stop me - I'm still going to live and love and laugh and have a great career and wonderful children and I'm going to travel the world and take the train across the country and enjoy a billion Christmas mornings with my incredible family - but it will always be there. I will always have to test before I eat. I will always have to take my insulin. I will always have to go see an endocrinologist (which is another weird thing! My peds ladies and I always had an end in sight to our relationship, much as that still breaks my heart. But my endo going to be my endo, she'll be the one who tells me I can get pregnant and who will help me with all that (probably, I've heard she does maternity endocrinology too) and it's just so strange to me that when I'm a mum and an established RN and a grown-up and all these things that I will still be going to see her).
And the thought of 'always', of 'forever', is something that terrifies me.

I think maybe because 'THE CURE' was so promised when I was first diagnosed. Maybe that's why. Maybe it never sunk in that this could be forever because everyone said it would be cured in five years. And obviously it hasn't been, but I do believe that it will be in my lifetime. Or at least they'll find a treatment option that requires so little involvement that it's almost close enough. I do believe that will happen, but until then, this is my forever. And I can't process that.

Maybe it's because I've been reading so many stories about little kids who will have been dealing with this literally as long as they can remember. Maybe it's because I'm not the 'youngest diabetic' anymore like I always was at camp. Maybe it's because the times when I can remember what it was like to not have diabetes are becoming few and far between, Maybe it's because I'm growing up and everything's changing (still).

Maybe it's because I'm starting to realize that I literally do not know who I am without diabetes. I would still be in Girl Guides. That's the only thing I know. Would I have gone travelling as much as I have? More? Would I have not gone to college and gone to explore the world instead? Would I be majoring in math? Or art? Would I have moved across the country for school? Would I be a knitter? Would I have the job and goals and dreams that I have? Would I be anywhere near who I am today?

Maybe it's because I haven't had actual human contact with a T1 friend for significantly too long. I'm meeting a few new people with T1, but we're missing that established contact.

Maybe it's because I'm realizing there are SO MANY people dealing with this, but it's still so invisible. So many people that I've talked to recently have a connection that I never knew.

Maybe it's because I am still hardcore struggling with transitioning to adult care. This sucks so much. My nursing career goal is to make this process better for everyone involved because the amount of emotion I am trying to deal with is too much.

Maybe it's just because my pancreas gave up on me and although I'm realizing it really wasn't his fault (srsly guys it was our immune systems the pancreas is just as much a victim as we are) I'm finding it really hard to take his place and I'm starting to give up on myself.

Maybe I'm depressed. Maybe I'm lonely. Maybe I'm just scared. Maybe my immune system is attacking the defenses I put up in order to effectively emotionally deal with this and now everything's crumbling and I don't know how to fix it.

Tuesday, December 20, 2016


They say diabetes is an invisible illness.

And when talking to my coworkers last night, who had literally no idea how much work I have to put in to deal with this, it did feel invisible. When people are shocked to find out that I'm diabetic, it feels invisible. When I don't feel any different from anyone around me, it does feel invisible. When I finally manage to fit everything I need to carry into one tiny little clutch, it feels invisible.

But when I'm trying to get dressed to go out and all of the shirts I want to wear make my pump hard to hide on my waistband; when the bra I'm wearing won't support my pump because of the pretty but frankly annoying little jewel in the middle; when my CGM sensor feels really, really prominent and obvious (even though it didn't this morning and I thought I was used to it and I thought it would be hard to see); that's when it feels visible. So, so, visible.

I wanted to go back on pens because I'm so tired of wearing a box on my waist. I didn't want to try a CGM because I'm scared of not only the constant information it will provide, but the fact that it will always be THERE and so much bigger than a pump site. I decided not to go back on pens because I can't handle that loss of control.

I love what these technologies give me. I love that I CAN go out to dinner, even if I have to take a bunch of stuff with me wherever I go. I love that I am alive, and living, and laughing, and able to have as much fun as anyone else.

But when it feels so easy to see, but nobody else can see it; that's when it's hard to handle.

Saturday, December 17, 2016

It's the little things. It has to be.

When diabetes (and life) gets me down, it's healthy and important for me to take little steps back to happiness. Not 'I'm so glad I have this insulin pump that keeps me alive' steps, but baby steps.

1) Finding four tubs of my favourite flavour of dex tabs. This is a big deal, because it would appear that my favourite flavour has been discontinued and has been replaced with an 'improved' (ie awful) version. Now I have 200 tabs to tie me over! Plus there are new flavours which maybe won't be bad? Citrus punch and tropical...they're mixes but, y'know, I've never been opposed to lemon or cherry...

2) Getting dressed this morning and realizing that wearing a dexcom sensor maybe isn't such a big deal. It felt like a huge deal yesterday. (Like an almost-anxiety-attack, constantly checking on it, feeling super self-conscious huge deal). (Nobody even noticed it).

3) Finding a research study that is literally exactly what I need. They want to know how to improve peds to adult diabetes care transition, which is, I've decided, is the thing I'm going to fix with my nursing career. Please participate (or at least check to see if you can) HERE!

4) "I'm doing okay". Yes, my (trial) Dexcom graph is a bit roller-coaster-y, and maybe yesterday's logbook was red, but tomorrow will be better. I'm thinking more, I'm trying more, and I'm going to experiment to find out what works. Seven years and we're still guessing. But that is okay. I am okay.

5) New meter cases. I recently gave up and am going to make my own (which I am still, I planned it all out!) but seeing a box full of free meter cases cannot be passed up. It's actually really nice! Yes, still black, but not vinyl and something different. Accu-chek, if you could pass your case-making skills on to everyone else, that would be fantastic.

6) Realizing that you have a choice. In some things at least. I did the pre-end-of-year supply run today, and the lovely lady at the CDA only had pink sites. Of course I don't mind, I said. Then she mentioned how she really didn't think it mattered (it is a small piece of a small site, and it can be pink, blue, or grey), no one was going to see it. Which is true, I suppose. But then again, why is fancy underwear a thing? Right? So why shouldn't there be colours? So much of this condition is medical and black and shiny but not exciting. So heck yes I want my site to be pink. (And sometimes blue. But pink for a while because that's all they had).
For a long while, I was using longer cannulas, and they were only ever stocked in blue. And I got sick and tired of it! I am definitely a pink person and that is honestly a big part of why I switched to the shorter cannula and more easily accessible sites.
When I look at the pictures of me on top of a mountain in Russia, I see a tired, trying-not-to-cry-because-she's-homesick-and-it-turns-out-she-detests-hiking girl (who is also a little bit proud because she just hiked up a mountain). I also, inevitably, see diabetes in the picture. And maybe that day got better because that site was pink. Maybe it didn't matter a whit. But maybe that day was just a little bit less worse because that girl didn't hate the thing stuck to her arm.
I will strongly hold my place that colour is important. And choice is important. And yes, having it at all is more important than having a pink one, but mental health is just as important as physical health. If I'm feeling a pink site, a pink site I will have. I have three boxes open right now because honestly, colour matters a lot to me! And I am very glad that I get to choose.

I might not choose diabetes, but it's the little things.

Sunday, December 4, 2016

Not always THERE, but still there.

I looked around my room this morning, and I didn't see the room of a diabetic.

I saw the room of a world travelling, train-loving, book-loving human who lives with a lot of colour, has too many clothes, and hasn't redecorated since she was two.

Diabetes isn't anywhere to be seen on my map of the world, in the pictures on my wall, in the train beads strewn across all my display places.

But it's there.

It shows itself with Ruby the diabetes bear on the bed. The glucometer case sitting, unzipped, on the nightstand. The out-of-place looking box full of supplies in the closet. The biohazard bin on the bookshelf. Were you to open my dresser drawers, you would find one full of medical boxes and tubs of glucose tablets. There's an Animas business card on my computer, a sticky note on my desk, a magnet on my board. There's a JDRF shoe magnet there too.

It's not shouting its presence. But it is whispering it.

It's the small things that make us who we are.

Overwhelmed by the opposite of loneliness.

Even though I was really really nervous and anxious and lonely and scared, a few nights ago I went to a diabetes event BY MYSELF fully expecting to be the shy, quiet, anxious girl who was also the only one who came alone. I didn't expect to know anyone; I didn't expect to learn anything; I wanted to go but I didn't know what to expect and that scared me. Had things worked out differently, I may not have gone, but I pushed myself and I did go.

And what a great decision.

People started talking to me. They genuinely wanted to know my thoughts, how I felt, how things were going. People that I didn't know but had a connection with.

I may have been the youngest person there (by a long shot, which is still one of my problems), but I was not the loneliest person there. I met people, I made friends, I found new and local resources, and I learned a bit about myself.

This event was immensely improved by the fact that when I walked in, I saw my Animas guy. Love him; haven't seen him in a long time (when you stop going to peds clinic...)
This improvement was compounded by the fact that the guest speaker! Was someone who I adore and actually really look up to! And was someone I had kind of expected never to see again! We had an awkward hey-nice-to-meet-you-wait-I-already-know-you kind of thing, but it worked out. Mentors are so important, guys.

I struggled to keep the tears in my eyes quite a few times that night. Had somebody tried talking to me at key points, I would have burst into tears. I was overwhelmed - but it was a good feeling.

To hear pump beeps and vibrations around the room that weren't mind; to watch others look down automatically even though they knew it wasn't them beeping; to hear the speaker say "just let me check - 8.9! Good to go!" and to hear others talk about this experience that we all share was an incredible thing that I forgot mattered. It matters a lot. I wasn't crying because I was stressed or anxious or scared; I was crying because I had refound the community I thought I lost and for the first time in a long time, I wasn't feeling alone.

It also struck me how invisible this thing really is. Had I not been looking for a pump bulge, I would not have seen it. Had I not know these people had Type 1, I literally would not have figured it out. Even when we're not hiding it, it still stays pretty hidden.
That makes me wonder - how many people do I pass in the hall that are thinking the same things? How many people are sitting beside me, feeling lonely because nobody understands?
There's so many of us, but we're hard to pick out of a crowd.

Diabetes is a HUGE part of my life. It needs to be. I've been playing it down a lot the last few years, and I need to stop that. One of the books I read recently said that, on a first date, you should talk as much about diabetes as you would a favourite hobby. I think that's a good ratio.

Diabetes comes second to me - but, still, second. That's at least a place on the podium.

Friday, December 2, 2016

Shaken to my bones. And not just because fitbit alarms are really intense.

I slept through a low this morning.

And not just a low, but two fitbit alarms (vibrating on my wrist and therefore up into my soul) and seven phone alarms. (Getting up on time is not a joke to me!)

I have very rarely missed an alarm that I needed to get up to. And it's not that I didn't have them set - I just didn't respond. And not in the 'oh yeah, five more minutes' (or alternately, I hear your annoying tune and I raise you "I'm going to lie here, wide awake, until it stops") get up and turn it off, rinse, repeat non-response.

I do not have any recollection of waking up AT ALL.

I slept an hour and a half past when I am supposed to get up.

And I only woke up because my mom came in and woke me up and asked when I had to leave.

I am scared. This has never happened before, although now I'm realizing that those few mornings when I woke up covered in sweat probably weren't because the heater went into overdrive at two in the morning. The mornings I slept through a few alarms may not have been just because I was tired.

I was very fortunate in that nothing bad happened other than I was a minute late to class.

(I also decided this morning to finally register with the disability resource center because a) what if this happens again b) what if there's no one to wake me and I sleep through an entire class or c) what if this happens on an exam day? I'm sure teachers would understand...but what if they don't?)

I spent the morning reflecting on my own mortality, panicking about what could happen, and dealing with another bad low that I didn't feel coming. (Also a major point of concern).

I'm really leaning towards starting on a CGM, which is another scary thought. But, in line with the conclusion I came to this morning, not as scary as the thought of not waking up.

It could have been a lot worse. I literally could have died.

And that scares the shit out of me.

Thursday, December 1, 2016

I'm starting over.

I've been re-inspired.

I'm done with diabetes getting me down.

I'm ready to move on. Ideally I'd like to move on past diabetes, but oh well. I'll move on however I can.

I'm ready to eat better, to try harder, to let those out-of-range numbers affect my emotions less. (Also, I'm ready to get them back into range).

I'm considering a CGM. My pump has a new screen protector. (I was going to start a whole new blog but it turns out that costs money.)

My phone is loaded with Beta Cell podcasts for whenever I need them (you seriously need to check this show out it is the most perfect thing I have ever heard and shoutout to Craig for making it happen)

I went to a pump night at my clinic tonight, ran into some old friends which was honestly incredible and reminded me that no, even though I'm an adult now, I'm not all on my own. The same people (as well as new people) are there for me whenever I need them.

I'm going to get involved. I'm going to use my voice. Am I going to post on here more? An hour ago I would have said yes but now I'm going to be honest with myself and say no. But maybe more than recently.

I'm going to put #mefirst but I'm also going to be more open about diabetes and how it's affecting me. Because yes, I'm fine, but I'm not always, totally. I need to realize that and I need to let that in.

This shit is a lot to deal with, and I am done with it weighing me down.


Resources that I have recently gotten a lot out of:

Libby is literally the most incredible person whose blog I have ever had the honour to read, plus her instagram is amazing, plus she like my instagram post this morning. So. I'm kind of in love.

Beta Cell as mentioned above (I'm not kidding go listen to it right now) (NOW)

Beyond Type 1 is a fabulous developing community

Type one nation has provided a lot of direct connections and is a refreshing place to realize that we are really not alone

My clinic has been great - they had an event tonight that brought up emotions in me that I forgot I still had. It was incredible.

I'm going to use these resources, and I'm going to talk to people, and I am going to stop pretending that everything's 'just fine'. Look out world, here I come!

Monday, August 8, 2016

Things feel...different now.

So, I'm a big girl now. I'm starting Nursing in September. I just got back from a month-long trip to Russia and Mongolia. I go to the adult clinic now and today I rescheduled my appointment all by myself. Diabetes keeps falling a bit by the wayside, but it is still unfortunately so much a part of me. It will never stop me, but I need to remember that it will never stop, either. I'm a dia-beauty, and I will be for a long time.
I was talking with someone at work about scholarships and I mentioned there were diabetes ones (which I didn't get). Her comment threw me off a bit and I still don't know how to feel. "It's kind of silly that there's scholarships for that. I mean, it doesn't hold you back or anything!"
No, it doesn't. But is that because I work harder to prevent being held back? Is it only because I have decided not to let diabetes get in the way?
But it can be, it is, a barrier. It's an emotional one, certainly, it's a financial one in some cases, it's not always a physical one but it can be. Your diabetes may vary - but does anyone's ever hold them back?
Should we get disability tax credit? Should I be able to receive help from the school disability center if I need it? Should diabetes ever be an excuse?
I feel like the work we put in isn't always recognized. Yes, some days I test four times and leave it at that, but other days I test every hour, have combo boluses and temp basals running, have to tweak my basal rates, have to keep an eye on how I'm feeling to make sure I don't go too far out of range, have to really consider what I'm eating and what I'm doing and whether it's the best thing for me right now. And dealing with all this on top of doesn't feel like a big deal because it's just what I do. But it feels like it should be more of a big deal. It's a deal, at the very least.

I don't know. I'm coming up on seven years and that scares me. Diabetes is so much a part of me that it shocks me a bit when I think of life before diagnosis/when I realize that other people don't mentally calculate carbs all the time/when people ask me what a normal blood sugar range is because they don't know. It annoys me when people ask how to take care of me because they should just know. I prefer answering questions to hearing assumptions, but I feel like I'm talking to children because my brain just thinks everyone should know. And I don't like it. (On a sidenote, actually, it's interesting how much actual children retain when I teach them about diabetes. Years later girls will come up to me and say hey! Bubbles is on your arm! or hey, are you eating that because you're low? I love that they will ask their questions with genuine curiosity with no fear and no assumptions. I love that they just seem to know how to act.)

So. Seven. That feels like a big number.

Bittersweet and close to my heart

I read a book last night that made me cry.

It was a kids' book, meant for middle schoolers or thereabouts, and it made me so emotional that a) during the day I had to put it down numerous times because it was overwhelming and b) when I was reading at midnight I was crying so much that my dad came to check on me.

The book is called Bittersweet, by Winnie Mack. Yes, it's one of those diabetes books.

One of my former Sparks mentioned it to me and I thought, what the heck, I'll read it.
The first chapter was tough. The main character is twelve. And it is written for twelve-year-olds.

It was written recently, so the real-life diabetes bits are not outdated (as they are in so many fiction books). It was written poignantly, with a narrator who shares her thoughts and feelings so well that she leapt straight into my heart. It was written about a diabetes diagnosis that was so reminiscent of my own that I couldn't read it without evoking emotions I thought I'd done away with.

It felt so real. And I was so glad to finally read a book with a character with whom I can identify who wasn't cheesy, or not trying, or unfeeling. Her experiences and her emotions lay out exactly what I felt when I was twelve, and new at all this, and scared. This book put a voice to everything I was trying to say.

This book is what I wanted to read when I was searching for a book to identify with. This book is what I wanted to write when I gave up on finding one and decided to make my own instead. This book may be for kids, but it's one of the best books I've read and if anyone asks me how I feel about diabetes, this is the recommendation they're going to get.