Monday, 27 July 2015

15 Random Things About Me…


I’ve never done a blogging challenge before, but reading CarolynThomas @heartsisters and Natrice Rese @NatriceR wonderful posts on #15randomthings about them made me want to know #15randomthings about so many of the people I follow and read. It’s the random little bits that let you get to know your friends.

So, in that spirit… here are 15 random things about me:

  1. I am a naturalized citizen. I was born in Portugal and came to Canada when I was 5. Growing up I did everything I could to make myself as ‘Canadian’ as possible. I wanted to be as much like everyone else as I could possibly be. I bemoaned the fact that there were no keychains or pencils with the name ‘Isabel’ on them and that no-one could pronounce my very Portuguese last name. It was only as an adult, and especially as a parent, that I’ve come to realize how important my Portuguese heritage is to me. That so much about me is Portuguese and that I am so grateful for that and that I hope I pass down those values to my kids.
  2. As a kid I was bullied. And worse than that, excluded. I spent a long time not fitting in and despairing in sadness. I thought that it would never get better. School was so, so difficult. The academic part was easy and I spent my time getting lost in books and learning as an escape but it seemed that the more I escaped, the less I fit in. And again, once I grew up, the things that were difficult, were the parts that made me happy and whole. There’s a lesson in that, I think.
  3. University was a special kind of freedom for me. I was off on my own where I found my people… Really, there were hundreds of people that all wanted to find out about how and why the world works the way it does? It was magic. It’s weird. I’m finding the same kind of community on Twitter.
  4. I love the water. Being on any kind of watercraft; sailboat, powerboat, innertube, paddleboard, I don’t care put  me on anything on the water and I’m happy. Does anyone want to buy me a boat?
    My beloved SUP - a Christmas gift from my husband
  5. I don’t feel like a meal is done until I’ve had a little bite of something sweet. That isn’t to say I have dessert every day, but I WANT dessert every day. Oh well.
  6. I’ve spent time in Africa before the age of five but I don’t remember nearly enough and I’d like to go back.
  7. Pretty things make me happy. If I buy a plain notebook and a sparkly one, I’ll use the sparkly one. It took me an inordinate amount of time to figure that out. I’ve wasted a lot of money on plain notebooks I didn’t use.
  8. I colour code my family calendars. We may be over-scheduled.
  9. My lists almost always contain the item ‘make a list’ so that I can always cross one thing off.
  10. I love to travel and see new things and taste new foods. In fact, tasting new foods and taking new photos may be why I like to travel. My husband and I once took 3 months to travel the East Coast of Canada. We didn’t have a lot of money and we used the ‘Lonely Planet’ guidebook. We often chose where to go based on good food recommendations (among other things of course – but there was this one place with cinnamon buns – WOW!)
    A street in Paris - a scene from my honeymoom
  11. I got my first SLR from my dad when I was 16. It was a manual Chinon with a variety of lenses but I loved by 70-210 lens with macro. It had been my dad’s as a youth and he taught me how to use it. I loved that camera and I loved taking photos with it. I don’t think I’ve ever loved a camera as much as I loved that one.
  12. Technology makes me happy. Ok, sure, it frustrates me. When my devices don’t work, or I can’t figure them out, I’m fit to be tied, but when I can figure out how to do something or I get a shiny new toy and can make it work I feel like I’m IN THE FUTURE!
  13. If I don’t have two or three unread books in the queue I get kind of stressed out. I need reserve books. I think that’s kind of weird. I’m a bit better now that there are e-books and I can just get more or take out a new one, but what if the internet goes down and I can’t get a new one and I run out of things to read?
  14. I love to downhill ski, but it’s something I’ve come to as an adult. I actually grew up playing hockey (does this count as two things?) and skiing was something I would (grudgingly) do if there was no hockey tournament/game/practice. I was always to cold and my feet always hurt. Hey it was Eastern Ontario, what do you expect. I tried skiing again when my kids were young because of where we live and because it was a sport we thought would give our son some freedom. I only went to support my kids. I was NOT looking forward to it. Who knew? I LOVE it! I think I’m probably the biggest fan in the house now. The freedom! The speed! Plus now, I have better boots and gear.
    Sweet, beautiful 'me' time on my local mountain
  15. I need to start buying more ‘grown up clothes’ but I keep slipping into buying more ‘ironic’, ‘nerd’ and ‘sciencey’ t-shirts. What can I say? They’re fun. The kids keep trying to steal them, though.
    A small sampling of my collection - it's laundry day

So there you have it, today's random things. I'm sure if I wrote this another day, you'd get something completely different! If you're reading this and write your own blog, why don't you share your own #15randomthings?

Saturday, 18 July 2015

Patient Centred Care - Like a lot of things, I’m not sure what it is, but I sure know what it is when I see it.


I always like to tell a funny story…. For many years my son talked about one of his favourite doctors. He’s been his favourite health care provider because whenever we went there, the appointments were (in my son’s perspective), mercifully short. For a young boy who spent a decent amount of time at the clinic and the hospital, listening to adults ask questions and receive information, these appointments with no preamble, little information, and mostly self congratulation, were bliss.

However, from a patient centred care approach, I’m not sure I agreed. To be fair, technically, I had no fault with this doctor. His skills were, for good reason, legendary. My son was in excellent hands. But, when it came to those small touches that makes the family feel like they are, at that moment, the centre of the health care practitioner’s world? Well, not so much. The appointments, however, were definitely brief.

We recently had a new health care clinic added to our roster and our initial appointment was scheduled to last two hours – the 13 year old approached it with dread! His tolerance for medical appointments has gotten better with age but surely not that much?

This appointment was a completely different animal from anything we’d ever experienced. This was more than #HelloMyNameIs! This was #HelloWhoAreYouAndWhatDoYouNeed? From the get-go, the questions were about what were our goals for his care. And let me be clear – not just my goals, his mom, but his goals, the patient. The entire appointment was about our partnership as a team. How we could move together and facilitate a working relationship in order to effect better healthcare for my son. Wow. Let me say that again – Wow!

Living life with a rare disease, with an undiagnosed disease, has been a life of my project managing a healthcare system that I’ve been working on figuring out myself. I’ve sorted some stuff out. But I’ve missed a lot. Some opportunities have passed me by. I think I’ve done a reasonable job, but, (and this is a BIG but), I am only aware of the things I’ve missed because of other parents. What else have I missed? And how has they impacted my son’s life?

I can not tell you how relieved, unburdened I am to have this new clinic talk to me about a team approach.

Patient-centred care. I may not be able to explain it succinctly, but can I ever tell you when I see it!

ADDENDUM
A week after this appointment we went to another new specialist. Amazingly, another beautiful example of patient centred care. We see a lot of specialists, and for the most part I don't doubt their knowledge base, but we need so much more. We need partnership and lateral thinking.

After the second great experience in seven days here's what I've distilled as [some of] my needs for patient centred care.
  1. Tell me who you are and describe you specialty.
  2. Ask questions to listen and give me (and my child) time to speak.
  3. Ask me what I need from our relationship & how we can build a plan together.
  4. Tell me what you can give and what your limits are.
  5. As a parent of a patient, don't just address me, address my child, your patient.
  6. Tell me how we can communicate in the future.
I now realize that health care providers like this aren't the unicorns I thought they were. They need to be celebrated as the leaders they are.