IMG_1335

While I often update my disclosures page without a whole post about it, this one needs attention called to it. Because, transparency.

Last week, I signed a contract with AstraZeneca Global, to participate in the Global Asthma Patient Partnership Program, after engaging in an initial webinar to get a feel for the experience, and receiving an invitation to join the Program for a year. I will receive financial compensation for my involvement on projects that I can opt-in-and-out of on a project by project basis. The initial webinar was also compensated by AstraZeneca.

I had hesitations. I thought long and hard. I asked questions about the contract. I deliberated alongside others in the same position; others aware of and sharing in the concerns I have about being involved as a patient with a pharmaceutical company. (You can also see this post from 2015 about going on a trip to Denver to learn about a GSK sponsored school asthma program on GSK’s tab, and my thoughts.)

AstraZeneca and its products are no longer a player in my own asthma management (I do have a Turdoza inhaler at home, although that’s a long story and is not actually one of my meds). I switched out Pulmicort for Qvar and then Symbicort for Zenhale close to five years ago. Had I been on AstraZeneca meds, this would actually be much harder, if that even makes sense, as their product(s) would be the ones keeping me healthy.

Do I think I am “partnering” with AstraZeneca? 

No, not exactly—more accurately I’d call it consulting. AstraZeneca can take or leave my feedback. I receive compensation either way. Just like I do and will write honestly, I’ll give them feedback honestly, too. Compensation won’t change that (unlike physician prescribing practices—see: Who Pays For the Pizza). I won’t be switching my meds out anytime soon. It’s likely that I won’t discuss AstraZeneca at all, which has been the case with GSK (considering I even get embargoed press releases since Denver).

Learn more about the AZ Patient Partnership Program by checking out the FAQ

Know that this is a trial run for me, too. I’m still getting a feel for this and how exactly I want to move forward. I can terminate my agreement at any time, but I am hoping that this is a positive experience—while it probably (almost certainly) won’t change how I see pharma, hopefully it changes how AstraZeneca sees asthma patients, which is maybe even more important.

Have questions? I cannot disclose anything discussed in the projects I consult on with AstraZeneca. (Nor, you know, their products/drugs, because I am not a doctor.) Otherwise, please let me know if you have questions or concerns and I will do my absolute best to address them.

Disclosure: As I have signed a contract with AstraZeneca, I provided this post for review by the Patient Engagement Director prior to publication (the only edits requested and made were referring to AstraZeneca by its full name). AstraZeneca did not ask me to write this post (rather, the opposite per the contract, although the Patient Engagement Director was encouraging). Transparency, however, is extremely important to me. I want you to know these things, so that we—as patients—can be more critical. 

It’s #BellLetsTalk Day, which here in Canada is the one day of the year that people—for better or worse, and sometimes to just bash Bell—stop to talk about mental health. I’m not getting into the Bell thing—it’s a thing.

http://i0.wp.com/farm1.staticflickr.com/283/32488879416_3f9cd185cf.jpg?resize=500%2C379&ssl=1

What I am getting into is this country has taken the time to pause and reflect. This is awesome. I have seen so many of my friends on Facebook share their struggles and triumphs and stories of living with anxiety and depression; of going to therapy and of choosing to try medication. People who have dealt with these things since childhood, or who are navigating mental health concerns for the first time as adults. To all of you who have shared your stories—today or any other day—I am so proud of all of you. Thank you for being bold, embracing who YOU are, and sharing your journey: I hope that it makes people in your world see “mental illness” differently, and see you just the same, because you are. You are important and your story is important. Every damn day, not just today—the highs, the lows, your story is important. Every. Freaking. Day. 

I am right here with you.

ADHD is a neurodevelopmental disorder, but one that is also considered by some—including the Canadian Mental Health Association—a mental illness. Like depression and anxiety, ADHD is caused by an imbalance of chemicals in the brain, specifically neurotransmitters.

And I’ll be honest, there are days that I can’t believe that. There are days that I see attention deficit disorder as a blessing or a gift or whatever cheesy, cliche thing people say and how could that be a mental illness? How could it be something that isn’t awesome? Days that I am on my A-game, that I have witty remarks that come out the right way, and that words just fly out onto the page in front of me, and days that my energy is exploding out of me in a way that actually feels good.

Except, more often, there’s the flip side to ADHD. The self-doubt, the feeling that I can’t do things right because I have failed to meet expectations so many times, the times I cannot focus enough to figure out the simplest of things—or even when I can focus, there is information my brain simply can’t process. There are the times that not only can I not understand why I am reacting to things the way I am, but also that it is a tidal wave: my feelings just crash over me and I can’t figure out how to just stop this and react how I know is “normal”. It helps—a bit—knowing that this is common for kids and adults with ADHD alike, that we legitimately feel things more intensely and for longer than other people do [1]. But it only helps after the fact. There are the times I hyperfocus and fail to get anything done that I actually need done and only let myself down; others that I again feel like I’ve failed someone else. The words “I forgot,” or “I’m sorry,” are not less true when they come out of my mouth: I mean it. But I get it: it’s hard to accept, again, when you’ve heard it before, because it looks like carelessness. I don’t blame my ADHD—I blame myself, because ADHD and I coexist. I am not my diagnosis, but I cannot separate from it, either. ADHD isn’t just about academics: it’s about life. And it sucks when your failures or shortcomings are not for lack of trying, they are just because my brain is not wired that way.

But here’s the thing. It’s so much better than it was. It’s better knowing that there is a reason why some things are like they are. ADHD is not an excuse, but it is an explanation, if even just for myself sometimes. It’s better knowing how to figure out strategies that work rather than just feeling like I’m stupid. It’s better knowing that this is how I am wired, and that is okay

My first appointment with my psychiatrist back in 2013, she did not say it but she clearly made a note that I appeared anxious. I started medication for ADHD the next day. When I met her again a month later, early in the appointment she commented that I seemed less anxious even just on a very low dose of Concerta, and asked if I had felt anxious before. I told her that I hadn’t, but that things just “felt better” inside me. It was hard to describe—she understood. Every appointment I have seen my psychiatrist she actually asks about side effects. She asks how things are going. She asks how my mood is. Every time. Because she knows the statistics.

Research states people with ADHD are at increased risk for mental health issues: nearly half of people will experience an anxiety disorder, well over a third will deal with a mood disorder like depression, and 15% will develop a substance-use disorder. [2] However, if ADHD is managed correctly, be it through whichever combination of exercise and therapy and medication and eating well-ish, these things can either be caught early and treated early—maybe even be prevented. Maybe.
I am fortunate, I do not currently have any co-existing mental health concerns. That doesn’t mean that it hasn’t, won’t or can’t happen.

ADHD medication doesn’t give a person with ADHD any special ability to concentrate. I probably still focus less well than most non-ADHDers on 72 mg of Concerta a day. I don’t know because I’ve never had a non-ADHD brain. But do I feel better? Yes. Even though all of the above that I still struggle with. Part of it is because of medicine, but part of it is simply knowing what I am working with, knowing that other people experience this, knowing other people get me.

So, Canada.
You spoke.
I spoke.
We “talked”.
Now, don’t shut up just because Bell does.

Because we need this conversation. And we need the conversation to go further: to ensure mental health care is easily accessible—and affordable—for all Canadians. To make therapy with high-quality therapists affordable and accessible*. To ensure that services are available on demand, when people need them—weeks, or months, or years later. As a Canadian, healthcare for your body comes with the package—its a right. But care for your brain? It’s still on the table. (Which is closer than it’s been for a long time.) Stories are important, but so is access to care.

We need this conversation because we need every Canadian to feel confident they can be supported when they choose to share what they are facing.

Because my diagnosis is NOT about whether or not you believe it exists or not. It exists.

And we are living, breathing, singing, dancing proof that WE EXIST.

*Affordable and accessible therapy, to me, means to make therapy that is not income dependent or not something that is dependent on (awesome) charitable organizations like Aulneau, or educational institutions like the University of Manitoba Psych Services Centre. I’m uninsured, and if I can’t afford insurance, I can’t afford a $150 an hour therapist: which doesn’t mean that I should (or in some cases can) just wait longer.

IMG_1335

I coach two teams, I am semi-active(-ish)—per Fitbit, I’ve averaged 178 total active minutes a week for the last 4 weeks (and this is a period of time I feel rather inactive, but it still puts me over the 150 recommended minutes a week… although that is really moderate activity and mine is, um, mostly not?). But sometimes keeping it interesting is hard, and sometimes I just want to stick with the typical things because they are familiar, and familiar is easy (except then I don’t do the things).

Late last year, ParticipACTION (Canada’s leading physical activity promotion non-profit) took a vote of which physical activities were the country’s favourites—selected activities (and those voted on) range from the predictable (duh, hockey) to the “WHAT IS THAT?” (snow snake, stick pull) to the “BUT HOW?” (white water rafting, axe throwing, highland games).
These final picks are known as the 150 Play List. So now, I am setting off on doing them all. Sadly I have many from last year that I could have checked off that I have little clue how I will get in again this year (sailing?!).

Finishing week two of the year, I’ve checked three activities off the list so far (note: ParticipACTION apparently counts each time you do an activity as 1, so the site says I’ve done 7. Okay?):

1) Goalball. Well it probably is not any surprise that my favourite activity on the list got completed really early. I play goalball with the guys I coach almost every week, and last week (our first week back after the holidays) threw some pretty hard shots at me. I was surprisingly unbruised (except one tiny bruise on my hip, which I thought would be larger.)

http://i0.wp.com/farm1.staticflickr.com/461/32298581196_8d2c2ba714.jpg?resize=500%2C379&ssl=1

Doug came to goalball for our first practice back. We spend a lot of time laying around on the floor in this sport, I will be honest. Unfortuantely due to my shortness this is not actually a great defensive strategy for me most of the time.

http://i0.wp.com/farm1.staticflickr.com/494/31526724983_ea250e0244.jpg?resize=500%2C351&ssl=1

2) Walking. That was easy. Well, actually not terribly so, considering the dump of snow on December 26th and the lack of sidewalk clearing crews out (until Steve got on the news about it, anyways.)

3) Soccer. We only had a couple of athletes at Special Olympics practice this week, which meant that the athletes got to choose what we did. After playing floor hockey for awhile, we played soccer. My passes are as inaccurate as ever, FYI.

For the next 5 weeks at Special O, we are trying to get as many of these activities in as we can with our athletes. I already have goalball checked off, but I hope to be adding another 24 activities as we explore them with our athletes!

Now, we’re supposed to be getting some warm weather (after our wicked cold snap) so I hope it doesn’t kill off all the skating rinks or that’s going to pose a bit of a problem in regard to checking of “skating” and “hockey”…

IMG_1335

Hello, 2017. Hello, blog. 

I want to blog more this year. And read 50 books and watch 17 movies and write more things and learn Braille and also find more work (yay!). So I don’t know where the time for the blogging will come, but I’d like to post weekly. We’ll see how that goes.

http://i0.wp.com/farm1.staticflickr.com/418/32177559155_8c2c527c4f.jpg?resize=400%2C500&ssl=1January 1. As usual (except because I was sick last year and we delayed New Years Eve partying) I started 2017 at the Epp’s. Trish gave us pie before they went out, which we ate after midnight. We played Say Anything and Cards Against Humanity and Tom and I read parts of books that he got for Christmas. Because we are nerds?
As usual we also went to Jack Pott’s on New Year’s Day. Sadly, Dean won the annual air hockey game.

http://i2.wp.com/farm1.staticflickr.com/540/32139204026_a37862ef9b.jpg?resize=375%2C500&ssl=1

January 2. My mom and I went to bingo but apparently Share the Wealth bingo is weird. Anyways, we played penny slots after so of course I spent some quality time with Groovy Louie. I only ended up spending $19 of the $25 I put in so I consider that a win for like an hour and a half of entertainment.

http://i2.wp.com/farm1.staticflickr.com/780/31336101494_d24bec638b.jpg?resize=500%2C375&ssl=1

January 3. Well, that’s a good mail day (after a fun day with Dean and Jackie at Kawaii Crepe and wandering the Village.)

http://i2.wp.com/farm1.staticflickr.com/359/32139195136_512d693070.jpg?resize=281%2C500&ssl=1

I got a 3Doodler for Christmas but it jammed and was super terrible to get the maintenance cover back on so I took it back and got a Scribbler.

http://i2.wp.com/farm1.staticflickr.com/734/32139206506_5ab60f4fdd.jpg?resize=500%2C443&ssl=1

http://i1.wp.com/farm1.staticflickr.com/297/32139197846_f61a7a56f6.jpg?resize=281%2C500&ssl=1

So I made Dean and Jackie things. Yay!

http://i0.wp.com/farm1.staticflickr.com/403/32139203306_b9f122327d.jpg?resize=375%2C500&ssl=1

http://i1.wp.com/farm1.staticflickr.com/395/31802383180_545e5cc607.jpg?resize=375%2C500&ssl=1

I also got a package from the National Foundation for Transplant regarding Steve’s lung transplant fundraising. (More to come!)

January 4. Dean and Jackie and I went for lunch with my mom, aunt and cousin Alyssa. Dean and Jackie and I went to visit my grandma. Here are pretty trees down her street that Jackie and I stopped to take a picture of.

http://i0.wp.com/farm1.staticflickr.com/683/31335970674_e933d2b0a5.jpg?resize=500%2C375&ssl=1

Then that evening I used my new donut pans from Lindee to make chai donuts. They were delicious.

http://i0.wp.com/farm1.staticflickr.com/755/32029236462_ec6e54f4b0.jpg?resize=375%2C500&ssl=1

January 5. I did some work (what is work?!) and then went to get Dean’s oil changed with him and Jackie (exciting details, I know). Lindee made dinner including some of the best mac and cheese ever. EVAH.

http://i1.wp.com/farm1.staticflickr.com/769/32029218382_ae9f7a0248.jpg?resize=500%2C375&ssl=1

These darn kids are going back to Minneapolis and I think they should just stay here.

January 6.

http://i2.wp.com/farm1.staticflickr.com/770/32059252411_37750c5e0f.jpg?resize=375%2C500&ssl=1

After a bunch of really cold days, -16 feels like a heatwave where I just about like, melted in the mall en route to work. I was tempted to take my jacket off but I settled for unzipping it and my hoodie. After work, we went to the light show which, like last year, was rad. 

http://i0.wp.com/farm1.staticflickr.com/724/31335957964_204c698eca.jpg?resize=375%2C500&ssl=1
 January 7.

 

First cupcake of 2017 only took 7 days. And it’s basically the prettiest damn cupcake I’ve ever had. And, it was from Save On Foods at that. 
http://i0.wp.com/farm1.staticflickr.com/582/32059094661_86234264fb.jpg?resize=375%2C500&ssl=1

Miguel also threw a surprise party for my cousin Jenn’s birthday tonight, and while I was too busy eating that cake (Jeanne cake = best), but the cupcake really symbolizes that pretty well, too.

See ya next week! (Maybe even tomorrow, but… maybe.)