Thursday, June 1, 2017

Maybe You Were Having a Bad Month

"Maybe you were just having a bad month..."


Yesterday I had my endocrinologist appointment and I was looking forward to going because my a1c was the best it had been in forever and I had been wearing a CGM for the past couple months, so I knew that when my pump was uploaded, a beautiful graph was going to be printed.  I continue to work hard at managing my diabetes with the idea in mind of future family planning, my own personal health and just feeling GOOD.

As usual, while waiting in the doctor's office I hear the knock followed by, "Hi my name is _______ and I am a resident."  I am used to the whole spiel and even though I want to just see my own doctor and get out of the office and on with my day, I go through the whole process where they ask you a lot of questions, try to wrap their head around type 1's and our desire to get really into our own health matters - and me ultimately wanting to yell I am the CAPTAIN NOW! 


I wanted to bring up my thyroid test because previous blood work showed it was elevated, but the most recent blood work it was back within range. I was curious to ask my own doctor about it but brought it up so that it was written down in the Resident's notes (that I assume she relays to the doctor).  I also wanted to mention that I sometimes feel anxious but haven't for a couple months and was unsure if it was due to the thyroid or not.  I have never brought up that I was anxious to any doctor, frankly, I was anxious about saying I was anxious. 

Then I hear it straight from the residents mouth,

"Maybe you were just having a bad month..."

With a quick sentence the topic of anxiety was brushed off the table like nothing was said. I was back to where I started, why did I even mention it?

In my head I instantly thought, a bad month? 

If I broke my leg could I credit that to a bad month?

If my blood sugars were constantly high, could I credit that to a bad month?

If I had constant headaches, could I credit that to a bad month?

Are heart attacks, asthma attacks, insomnia, seizures, strokes... all due to bad months?

When will this discussion become serious? When will they listen?


Kayla 

Monday, May 29, 2017

Numbers

Diabetes is about numbers and not always the obvious ones.

It's about the number of juice boxes you wake up to after a night of lows.

The number of minutes it takes away from your day, distracted by numbers of carbs, blood sugars and site changes.

It's about the number of times you've passively said, "I'm Okay" when you feel like screaming inside.

The number of dollars spent on test strips, lancets, and vials of insulin.

It's each number of tears you've cried, pats on the back and the number of times you kept going when you thought you couldn't anymore.

Diabetes is about numbers and not always the obvious ones.


Thursday, May 25, 2017

He Asked, I Answered!

Something I love about this blog is being able to see in words how my life has balanced itself out.  To see those moments when I felt completely defeated, or those moments where I was over the moon with excitement.

I have documented my first week of diagnosis, to my celebrations of diaversaries.  I have detailed my trials and tribulations though College and University and breathed a sense of accomplishment when I completed both my diploma and my degree. I have documented the fears and challenges I faced while training and eventually climbing Mount Kilimanjaro and I have shared my gratitude for those fellow type 1's I have met along the way. I have shared my heartbreak during tough times in my life when relationships ended and family or friends had passed on. I have opened up my life story, one chapter at a time, diabetes related or not.

Today, I add a new chapter by announcing my engagement to my beloved Mike.  He came into my life in 2014 and we decided on forever May 22nd 2017. With this comes so much excitement as planning a wedding and being a bride has been on my mind since I was young.  Mike has been one of my biggest supporters in all of my endeavors, including diabetes.

He has been there through my highs and lows, he has picked up my numerous empty juice boxes, rocket packages and test strips and he knows that while diabetes is not easy on either of us, we both can make it manageable and work along side it along our journey together.

I am ecstatic, and so happy to see this chapter unfold.

Kayla



Friday, May 19, 2017

Blog Week 2017: More Than Diabetes


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! 


Stepping back from diabetes, what is my passion?  I love to write, which I am sure isn't a surprise.  I love to create.  Whether that involves writing or not, I am passionate about creating something that doesn't exist, or at least taking something that exists and recreating it in my own way or fashion.  Mike laughs at me because anytime I am about to bake, I have the recipe up on my laptop screen, but I rarely ever follow it. "I am going to just figure it out..." I love to see what I can do on my own without having to rely on anything else.  I think that's how a lot of my ideas evolve even within the diabetes community. I am a go-getter. 

I am also passionate about my dog, which I am sure is also a given.  I have so much love for him and other shihtzu's - seriously.  I grew up with a dog from grade 6 onwards, and when I moved out on my own and finished University, after a really crappy breakup, I decided to get my own.  Cola, has been my absolute life-line and stress reliever. 

I love helping in the community and being apart of something.  I am passionate about helping others and going out there to make sure everything is just perfect. I am incredibly detail oriented so party planning, gift giving, all of that stuff, is totally my thing.  My friends and family know that I am the one to go to when looking to organize an event.  I am a planner and I am passionate about planning, and curating things just so.  My brother laughed at me recently because I said, "in my next life I think I will go to school to be a prop/set designer" he responded with, "look she's even planning her afterlife." 

Diabetes is obviously a huge part of my life and of course when people ask my passion I often respond with 'DIABETES ADVOCACY" But when it comes down to it, I do have many passions, loves and hobbies that I incorporate into my diabetes and how I cope and handle with the card I have been dealt. 

Kayla 

Thursday, May 18, 2017

Blog Week 2017: What Brings Me Down

What Brings Me Down 

 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?


Living with diabetes is hard.  It is harder than I ever thought it would be.   When I was diagnosed I tried to just be as brave as I could. I accepted that this was the new normal.  The odd time I would get stressed out or feel defeated, but before I knew it I was picking myself up again and carrying on as if nothing was wrong.  I did this for a long time, a real long time. Forgetting that part of taking care of myself, was mentally and I was failing hard.

I wanted to be the 'inspirational' helper in the diabetes community and I didn't want to have to rely on anyone else to help me be that person.  I didn't want to tell anyone that I was struggling just as much as they were. I wanted to appear calm and collected.  At my diabetes appointments, each time I'd promise myself, this time you're going to tell them that you're stressed out, that you think you have mild anxiety and that the passing of your uncle, who had type 1 really bothered you and effected the way you saw your own diagnosis. But, each time I left the appointment to scared to say a thing. I would think, "this appointment is going too well, I don't want to kill the mood with my problems." 

I have been an advocate for people to seek help, speak to others, share their feelings, join together and be brave, yet I was doing the opposite for myself. I was leaving everything inside and the pot would soon begin to bubble over at the foot of my bed one night, or at my cousins wedding when I had just one too many tequila shots.  This was my reality that I was keeping so quiet just to save face.

But, I have learned that I am not alone in my struggle. That many people with diabetes or not, are overwhelmed and over worked.  We spend so much time trying to please others and make things aesthetically pleasing that we forget about taking care of ourselves. 

Take insulin, carb count, keep your weight stable or lose a few pounds. Lower your a1c, make sure you get your blood work done. Don't forget to log your blood sugars.  Pack some low supplies, don't drive low. Change your site and your battery too. Leave some juice boxes beside your bed. Change your basals, bolus for dinner....

but also breathe.

Just take time to breathe and to find that person, that something, that thing you want to lean on, talk to, take a break with.  Just don't forget about what is inside that needs attention. 

Wednesday, May 17, 2017

Blog Week 2017: The Blame Game

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 have had both good and bad experiences of blame.  I have left appointments feeling empowered and also left appointments in tears.  When a person living with diabetes goes into an appointment, they know that every little thing they have done in the past two weeks to manage their diabetes is going to be combed through. They know that they will have to give explanations, justifications and reasonings.  For someone who has been doing fairly well with management, this isn't as much of a worry. For those that are struggling - which is a reality for most, this appointment can be very difficult. 

I know exactly the moment that I decided I needed to change my care.  I was feeling the 'blame' and was only a couple years into my diagnosis.  I felt as if I was getting feedback but was not getting support.   I felt threatened that if I did not take care of myself, I was going to lose it all. My privilege of having an insulin pump would disappear and it would be up to me to get my act together.

If I could re create the conversation between health care provider and myself I'd make it something like this:

"We understand that you are living a busy life with school, your social life and diabetes. Please let us know if there is any way we can support your in your diabetes management so that we can help you get to a better place both physically and mentally with your diabetes." 


It is only a couple sentences but those couple sentences would have changed my experience.  The number one thing I hear from people living with diabetes is that they wish their health care provided saw them as a whole person and not just diabetes.  We get busy, we struggle, we feel defeated - but that does not mean that we do not care about our diabetes. We need support. 

Kayla 

Tuesday, May 16, 2017

Blog Week 2017: The Cost of a Chronic Illness


The Cost of a Chronic Illness - Tuesday 5/16

Insulin and other diabetes medications and supplies can be costly.  Here 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?


This topic is hard to discuss because as a person who lives outside the U.S my situation is much different than say someone living in the United States or a third world country where insulin, medical care and supplies are a much different situation.  When it comes down to it, people living with diabetes need affordable and accessible medication and care. No if, ands or buts!  I have had the opportunity to speak with many people living in all parts of the world that do not have access to insulin, or proper medical care to deal with their diabetes.  I have met people just across the border that are paying 10x the price I pay for my very same insulin vial.  I have met people who have to walk miles to just get their blood sugar tested.

I am grateful for the care and access I get in Canada, but it is not perfect.  I am still out of pocket for my insulin and test strips, because I am self employed.  However, my expense is not enough for me to feel 'ripped off' or 'unlucky.' I am grateful that I can go to any drug store in my city and purchase insulin, and test strips. Do I think they should be covered by the government? Absolutely. Do I think that everyone living with diabetes despite their location should have this right? Absolutely.   

Without fair priced insulin/test strips, people with diabetes may not survive this disease that is otherwise manageable. For anyone thinking that people with diabetes deserve to pay the price of their own lives is ridiculous. You know the phrase, "the cost of an arm & leg?" to someone living with diabetes this could be a reality.  This is not fair. 

I try to avoid politics because that is not where I find my fit in the diabetes community, but following along with blog week, those are my two cents!

Kayla