D-Blog Week 2017: More than Diabetes

Let's wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! 

Whenever I am asked to describe myself, 'diabetic' usually doesn't make it into the list.

Which is kind of strange, because it has and has had a huge impact in shaping who I am today, and likely who I will be tomorrow.

It impacts those things - but it doesn't define them.

I am a Girl Guide. (Yes, still. And this is why. And this, and this, and this, and this, and this.) Guiding has taught me so much and has probably had more of an impact on who I am than anything else. Fifteen years, and still going strong - lifetime membership, here I come.

I am resourceful.

I am courageous.

I can make a difference.

I am CONFIDENT.

I am caring, and kind, and I love deeply and widely.

I knit like nobody's business.

I still sleep with stuffed animals. I love dinosaurs. My room has not ever been redecorated - it still has the hot air balloons and clouds that my parents decorated with when it was a nursery. I still sleep with the duvet that I got when I was two. I still have the duvet cover from when I was less than two. Until recently, I had the same mattress as when I was two.

I really want to own a life-sized, anatomically correct, skeleton model.

I am a nursing student.

I love working with kids.

I love polka dots and bright colours.

I love adventures. I have a persistent and bad case of wanderlust. Last summer I went to Russia and Mongolia just because.

I LOVE trains. So much.

I love music. I love pop songs and Disney soundtracks. No shame. I know every word to Hamilton, and I listen to Taylor Swift at headbanger volume when I'm driving.

I love sunshine. I love driving with my sunroof open and sunglasses on.

I love young adult novels, even though I'm starting to age out of that population.

I can't put stickers on anything. The commitment scares me too much.

I always have coloured pens on me, and my agenda is so colour-coded and so organized it's ridiculous.

There is so much more to me than Type 1. I don't know who I would be if diabetes had never come into my life, but that isn't something that I have to be concerned about. Without diabetes, I could be just as much the person I am. And diabetes may play into some or all of these things, but I am more than my diabetes.

As Kerri so eloquently puts it, diabetes doesn't define me; but it does help explain me. And that's that.

D-Blog Week 2017: (Throwback Thursday) What Brings Me Down

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? 

Here is what I wrote in 2014. And here I am, currently crying, because this is a topic that I don't really let myself consider.

Part of my coping is connecting with the community - and sometimes, disconnecting. I read a few blogs, I'm active in the Beyond Type 1 community, and I follow a ton of beautiful T1 instagrams. Sometimes I make a point not to visit those places, because they're not good for my headspace. And that is part of how I cope. The other parts include lying down on the floor occasionally, sitting on tables whenever possible, crying when I need to, and doing my best to go to my exercise class every week.

Other than that, I don't really cope all that well. 

Although it started fairly recently (and also went away fairly recently), I was dealing with daily visceral anxiety related to diabetes. Every day. Whether about lows, or highs, or potential complications, or something as simple as not knowing exactly where my blood sugar was. I couldn't stop it; I couldn't seem to control it; I couldn't breathe because of it. 

I've never passed out; I've never been hospitalized (post-diagnosis); I've never struggled with my diabetes before. But here I was, panicking, because of things that I knew full well probably wouldn't happen. 

I'm already stressed about having kids - and I'm not having kids for at LEAST five years. I have so many other things to worry about, why am I fixating on this?

I was obsessed with every blood sugar result, which resulted in feeling intensely overwhelmed because I was spending so much time focusing on diabetes. I cried quite a few times because it finally (seven years in) hit me that this is forever and there's nothing I can do. I can do my best, but that might not even be good enough. I'm worried about sleeping, I'm worried about my eyesight, I'm worried about every single thing that could possibly go wrong - even though I have "excellent glycemic control" and I'm not really at risk for anything. Except mental health issues, that is.

When I finally managed to bring this up, there were no solutions made available to me.

I know that there are solutions, but it looks like I'll have to find them by myself. Which I will, when I think I need them again. Now that I am able to admit to myself and to some others that I am struggling, I think I will be able to seek out the help I need. 

I just found this blog through D-Blog Week, and she hit it on the head. Diabetes and mental health are so intertwined - and this isn't something I realized until I connected with the community. It also isn't something I realized until it started to affect me.

This piece is also important to me.

I am so glad we are talking about this. It is so important. Diabetes is so emotional - so much so that I can't even articulate it. It's a chronic illness. It's forever. Because of this extra thing we have to deal with, all day, every day, that creates stress and anxiety and depression and burnout. Find out how to cope with it, what works best for you. Find the resources you need. Take a deep breath, go for a run, lie down and cry - do whatever you need to do. Diabetes and mental health are inextricable and we have to deal with both those things, but we will be okay.

D-Blog Week 2017: The Blame Game

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  

I never really blamed myself for my diabetes. I had a lot of "Why Me" moments in that first little while, but those where bigger than me. I knew it wasn't my fault; I knew there was nothing I could have done; I knew that the classmates' parents who said "wow, I thought your family ate healthy" was wrong.

I knew that. I know that. It's not my fault.

None of it, overall, is my fault. There is no one to blame except the universe, and the universe doesn't accept blame all that well.

BUT it is tough to remember that there is no one to blame for the specific incidences of diabetes. The lows, the highs, the A1c, the failed site, the irritation and stomachache that comes with fluctuating blood sugars...there is nothing to blame. It just is. This is diabetes, folks.

Sometimes it feels like it is my fault. The high that's been alarming for half an hour? Could have dealt with that sooner. The low alarm that I ignore until I feel it? Definitely could have dealt with that sooner. The days when I don't wear my Dexcom and I do not test nearly as much as I should/usually do? Not the best of times. The times when I prebolus and then don't eat as much as I expected? Saw that one coming. The times (like right now) when I know I need to change my site but I'm putting it off until it's a little bit more convenient? Also preventable.

I could blame myself for these, and much more. Sometimes it actually is my fault. But I cannot take the blame for every incidence because that blame gets really heavy really fast. And diabetes is already heavy enough.

So I don't say it's not my fault. I say this is what I do, and this is how I deal.

When people around me say "what'd you do?!" when I widen my eyes at the glucometer result, I don't answer them. I just get angry. So maybe I didn't bolus right for that snack. So maybe my site is failing and I didn't notice. So maybe diabetes just decided to do its own thing for a while. No matter whether I played a part in the specific incident, it's not my fault. It just is. It is something I have to deal with, and I will, and I will not take the blame for it.

When I first read the prompt for this topic, I thought that this didn't really apply to me. And then I kept thinking. And then I remember the A1cs that I was really proud of, and feeling that punch in the gut when the doctor doesn't congratulate me but says it's too low. And I remember the guilt when they point out tiny specific incidences of things I could have been doing better - even though what I could have been doing better was actually already pretty darn good. And then I remember the heart-wrenching guilt and anger and a thousand other emotions when my endo told me that I was at high risk for anxiety and burnout and depression and that there was nothing I could do about it.

No one gets to take the blame. There is no blame. Diabetes is diabetes, and it is what it is, and the concepts of guilt and blame and "what did I do wrong" shouldn't even be considered. The blame game is just that - a game. But it's like one of those elementary school games where the teacher announces that everybody wins (and then everybody groans). There are no winners, or losers, or blamers, or blamees. This is diabetes. It's not my fault. This is what I do, and this is how I deal.

D-Blog Week 2017: The Cost of a Chronic Illness

Insulin and other diabetes medications and supplies can be costly. In the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I am incredibly fortunate.
I mean yeah, I have diabetes, and it sucks, but it does not suck as much as it could.
I am incredibly fortunate to live in Canada, where healthcare accessibility is not dependent on one's financial status. I am fortunate to live in British Columbia, where our Fair PharmaCare program takes care of a fair amount of my prescription costs - so this means not only insulin, but also test strips, pump sites, cartridges, etc. (Still doesn't cover the tape or the glucose tablets or quite enough strips, but it takes care of a fair amount - especially in new pump years where I get everything 100% covered really early on).

I am fortunate to still be on my parent's extensive extended medical plan. I am fortunate that my parents still pay for all of my medical supplies. I am fortunate enough to be able to afford an insulin pump - and the one of my choice at that - a continuous glucose monitor (out of pocket - we don't get insurance coverage for CGMs here yet :/), enough strips to test as much as I want, and a stock of supplies that has lasted me since December. (I honestly question if I will need to buy sites this year...)

I am fortunate to have been connected with an excellent educational and medical team in pediatrics, and an equally-just-differently excellent educational/support/medical team in adult care. There were no barriers to my diabetes education or to my medical care.

I am fortunate to have found a community - several communities, in fact - who are supportive and open and there 24/7. I am fortunate to have found the strength within myself to have reconnected with these communities after losing touch for several years.

There are no financial, accessibility, educational, or other external factors that cause barriers to my diabetes care. There's anxiety, there's fear, there's burnout, and there's stress, (which are all a huge cost and I am still dealing with that debt) but those are all me.

I realize how lucky I am. It hurts my heart that not everyone has the same opportunities and fortunateness (which is actually a word I looked it up) and accessibility and knowledge as I do. Diabetes definitely sucks, but it could suck a lot more.

I know that I am fortunate. I know that because I have these opportunities and this access and this coverage, that diabetes is certainly easier to handle than if I were in a different situation. However, I am a strong believer in the fact that your suffering is never belittled by someone else's suffering. We all have a right to our own struggle, because it is just that - our own.

For me, diabetes doesn't cost a whole lot. That does not mean that I struggle any less.

D-Blog Week 2017: Diabetes and the Unexpected

It's diabetes blog week! And true to my word of getting back into the diabetes community, I'm doing my best to get back on this bandwagon :)

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  

The Girl Guide motto is "Be Prepared".

Considering that Guiding is a huge part of my life, as is T1D, I find this connection really funny.

I am not always prepared, okay. I try to be, but it definitely does not always happen. I have definitely run out of insulin on many, many occasions far from home.

My best tip is don't panic. My blood sugar doesn't go up too too fast due to only the absence of insulin, so this usually isn't the biggest deal. It's a bit panicky and definitely needs sorting out - and I always promise myself that I'll carry insulin next time (doesn't always happen. Getting better, but not always).

I try and carry an 'emergency kit' with me all the time - it's a dollar store button bag stuffed with strips, a site, a quarter, a battery, a cartridge and sometimes some other miscellaneous things. It's never got the thing that I need when I need it - I don't always refill them in a timely manner.

I put stuff everywhere - I have glucose tabs in every purse, I have emergency kits in every backpack and car, and I always try and do a double check for my glucometer/enough strips/Dexcom/glucose tabs/etc. before I leave the house.

Basically, all of this is a trial and error and I'm still figuring it out. There was a while recently where I couldn't seem to figure it out and I was literally panicking because of things I couldn't help. That was not helpful. Still struggling with that a little bit, and it is still not helpful. I cannot be perfect all the time, and I just need to get over that and get on with it.

We can't do everything right always. Deep breaths, do your best, try again next time. Phone your mum - she'll help fix it.

It's okay not to be okay. It's okay not to be perfect. Do your best to be prepared, but do not beat yourself up about it.

And if you're struggling, find the community. Beyond Type 1 is a lifesaver, my friends from camp are the bomb, and reading other peoples' blogs is amazing. It's a deep breath, it's not just me kind of amazing. That's what I expected the least when life threw this my way - that I would find such an incredible, inspiring, tight community who completely and totally gets it. Love you guys <3

The sun rises every morning.

And every morning is new and different.

I'm just suddenly fine?

I don't know what happened. I don't know if what my endo said was actually really helpful, or if I found other things to focus on, or if I just slapped myself into sanity.

I'm back to super chill all the time, only mild frustration, no panic attacks.

(Still super anxious about having babies, but that is so far in the future I just need to NOT worry about that right now).

I think I might have seasonal affective disorder. I think I'm probably already at risk for it, and my anxiety calmed down the second the sun came out in full force. Idk man. Idk. I guess we'll see next winter (which is a ways away).

So. I'm okay. And that's that.

Me: I am super anxious what can I do? Endo: Nothing, you just need to calm down. Me: I CAN'T I HAVE ANXIETY

I had my first appointment with my adult endo in her office today.

Apart from the office design (doctors, please make your offices friendly. It was hard enough to leave the train wallpaper of peds, but to walk into a white hallway and sit for an hour in a tiny super medical room? Gross! At least at my GP's the walls are yellow!), I have no major complaints. I do like her - that's decided now - I am happy with the way she looks at my data and explains things, and I think we will get on well going forward. I would like to feel a little bit more listened to, but we'll get there.

Leaving peds was hard, okay. I have always struggled with waiting three months between appointments, and six months is a significantly longer time. I know I can do this by myself, but I feel like you're trusting me too much. (I am doing fine. I know that.)

Also, like, major anxiety? About this appointment, yes (which is fine, it was fine, and now I know that for next time), but diabetes in general? And it won't stop? And I did manage to bring it up which I'm very proud of myself for, but I wasn't really offered any productive solutions. I'm going to try and calm down, so we'll see how that goes. I'm also considering booking an appointment with the school counselors (because they're free and then I don't have to explain the insurance claim).

She told me I'm definitely in the group that's at risk for depression and anxiety and burnout, but wasn't really able to help me. And I can't keep on with this anxiety, it's not sustainable.

There was helpfulness in the fact that she explained where complications start, where I want to be, and how I want to get there. And that seizures generally don't happen above 3.0. I don't know if knowing those things will help, but I feel like they might.

Technically, I am fine. I miss peds, of course, but then I remember how unproductive those meetings were towards the end. I think I'm just not ready to deal with this for the rest of my life, and I'm not ready to deal with it on my own.

Deep breaths.

I'll be okay.