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.
Sunday, December 4, 2016
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.
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.
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!
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 life...it 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.
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 life...it 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.
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.
Tuesday, September 30, 2014
I'm really sorry it's been a really long time.
Hey everybody. (I don't really know if anyone's still reading this, but I still love you all!)
Life's been good. I hope yours has been equally good. I finished grade 11 - thanks to the teacher's strike I only had to do part of one exam, but my marks were pretty good - and started my adventurous summer right away.
SOAR 2014 was fabulous - thank, Girl Guides! 2500 girls gathered in Enderby, BC, for a week of activities, friendship and fun. I went rock climbing, learned to deal with people who may not have been the easiest to deal with, experienced a thunder and lightning storm (under a tarp - it was a bit scary but also REALLY REALLY REALLY EXCITING), and had an all-around fabulous time.
And then I was off to Peru! I was one of sixteen girls in Canada selected to go do service in a small community (as well as some touring after all that was done). It was an incredible experience, absolutely amazing; I learned SO much about myself, community, culture, friendships...I now have fifteen super strong friendships all over the country. In my mind it's a bit like the DOC - I don't see them regularly - although I will see them again someday, I promise - but they understand me and I love them.
Diabetes has really not been a big thing lately. Although, writing this, I just realized that I was with diabetics all summer - one of my patrol at SOAR was diabetic, and one of the girls on my adventure to Peru was type one as well! (I was super excited about that and we got to talking about camp and communities and connections and it was absolutely fabulous love you C)!
So I've been busy. The strike took away the first three weeks of school, but we're finally back in and already working hard. I got a little stressed earlier, but I think I'm okay now. Grade 12, here we are. (I'm in a constant state of needing a nap and a hug - not sure if that will ever end?)
I guess I don't really have that much to say right now. I'd really like to go to a diabetes-connections thing (like the FRIENDS FOR LIFE CONFERENCE THAT WOULD BE THE ABSOLUTE BEST SOMEONE PLEEEEEEASE TAKE ME) but there aren't any around here. There's one in California in October - the FFL Focus on Technology - but that's a long way away, expensive to get to, and I don't have time. Someone should start something in Vancouver, that would be great. Maybe I should do that. Hmmm...maybe I'll wait until after grad. But I have clinic in a few weeks, so that'll be good. And I get a new pump in May!!! Wooo!!!
Actually, regarding a new pump: If anybody's reading this, I need help in my decision making. I'm going Animas for sure, but here's the thing: Ping or Vibe? I really like the CGM connection aspect of the Vibe, but I don't know if I could do this diabetes thing without the meter connection. And I could get a Dexcom seperately...(I think that'll happen no matter which pump I get, but still.) Does anyone have any insight? Used one or the other? Used both? How would you feel without the meter connection? With the CGM connection? Thanks in advance for any opinions!
I love you all, I'm sorry it's been so terribly long. *hugs*
Also, 13 days till year 5 is complete! Wow, that's a big number. Huh. (Hey any family members reading this you should bake me a cake yeah you should)
Life's been good. I hope yours has been equally good. I finished grade 11 - thanks to the teacher's strike I only had to do part of one exam, but my marks were pretty good - and started my adventurous summer right away.
SOAR 2014 was fabulous - thank, Girl Guides! 2500 girls gathered in Enderby, BC, for a week of activities, friendship and fun. I went rock climbing, learned to deal with people who may not have been the easiest to deal with, experienced a thunder and lightning storm (under a tarp - it was a bit scary but also REALLY REALLY REALLY EXCITING), and had an all-around fabulous time.
And then I was off to Peru! I was one of sixteen girls in Canada selected to go do service in a small community (as well as some touring after all that was done). It was an incredible experience, absolutely amazing; I learned SO much about myself, community, culture, friendships...I now have fifteen super strong friendships all over the country. In my mind it's a bit like the DOC - I don't see them regularly - although I will see them again someday, I promise - but they understand me and I love them.
Diabetes has really not been a big thing lately. Although, writing this, I just realized that I was with diabetics all summer - one of my patrol at SOAR was diabetic, and one of the girls on my adventure to Peru was type one as well! (I was super excited about that and we got to talking about camp and communities and connections and it was absolutely fabulous love you C)!
So I've been busy. The strike took away the first three weeks of school, but we're finally back in and already working hard. I got a little stressed earlier, but I think I'm okay now. Grade 12, here we are. (I'm in a constant state of needing a nap and a hug - not sure if that will ever end?)
I guess I don't really have that much to say right now. I'd really like to go to a diabetes-connections thing (like the FRIENDS FOR LIFE CONFERENCE THAT WOULD BE THE ABSOLUTE BEST SOMEONE PLEEEEEEASE TAKE ME) but there aren't any around here. There's one in California in October - the FFL Focus on Technology - but that's a long way away, expensive to get to, and I don't have time. Someone should start something in Vancouver, that would be great. Maybe I should do that. Hmmm...maybe I'll wait until after grad. But I have clinic in a few weeks, so that'll be good. And I get a new pump in May!!! Wooo!!!
Actually, regarding a new pump: If anybody's reading this, I need help in my decision making. I'm going Animas for sure, but here's the thing: Ping or Vibe? I really like the CGM connection aspect of the Vibe, but I don't know if I could do this diabetes thing without the meter connection. And I could get a Dexcom seperately...(I think that'll happen no matter which pump I get, but still.) Does anyone have any insight? Used one or the other? Used both? How would you feel without the meter connection? With the CGM connection? Thanks in advance for any opinions!
I love you all, I'm sorry it's been so terribly long. *hugs*
Also, 13 days till year 5 is complete! Wow, that's a big number. Huh. (Hey any family members reading this you should bake me a cake yeah you should)
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