Sunday, March 15, 2015

Birthday Boy!

Happy Birthday to my sweet boy, Indiana Jones! Indy is 7 years old today! 
To celebrate, I got him a buffalo bone that he will be enjoying after a swim up at the lake.

Thursday, March 12, 2015

Back from Los Angeles!

The drive to Manhattan beach takes about 20 minutes. While we were riding along, the driver popped in a tape that gives sort of a guided tour. I thought that was pretty okay because I am always interested in learning something about the places I am visiting. So we're going along and it tells me various things about what I am seeing when suddenly I realise I'm getting a narrative about the local raw sewage plant. Um...yeah...come to California, see our sewage plant! No thank you! (What were they thinking?!?) Fortunately, the script moved on from there with some fun facts about the beach.


Manhattan Beach was really pretty. It reminded me a bit of White Rock, BC. It's a little seaside village with quaint little shops, eateries and an expanse of white sands and rolling ocean as far as the eye could see. There was also a really nice pier. I had fun poking around and taking photos. When it was getting close to the time when the next shuttle was going to come along, I popped into the local ice cream store and got myself a cone. I decided since it was about 24C, it was perfectly okay to have coffee ice cream for lunch. It was delicious!

I hopped back on the shuttle and went to the second of two malls to shop at the Whole Foods. I wanted to pick up some bottled water and some snacks. I have no idea where the locals shop for groceries other than there because not once in my travels did I see a regular grocery store. It was really weird. The other odd thing is that the hotel I stayed in did not have a mini fridge in the room. A fridge in a hotel room is pretty standard in Canada.

I got back to the hotel around 2 pm and was able to check into my room and then I had to go do my second blood draw for the CIRCLES Study. I did my first one a couple days before Xmas, so it's been awhile.They drew 9 vials of blood. This is about 4 tablespoons or 58.5 ml, which less than you would donate to a typical blood drive. From there, the blood they collected is broken down into 40 individual containers. All blood samples are labelled with a unique code.The blood samples are shipped immediately to the biorepository lab in the eastern United States were they remain until researchers working with the Guthy-Jackson Foundation apply for samples to work with. This is one way in which I can help researchers work toward a cure for NMO. If you're interested in learning more about the CIRCLES study, I posted about it here.

Wednesday was NMO Patient Day. If you want to read about it, I have a post on that here. It was a long, but very interesting day. I came away with my brain absolutely stuffed with information and ideas. It was so great to spend time reconnecting with friends, making new ones and just feeling the sense of community. Everyone was so welcoming and friendly. I was feeling pretty cruddy because a week before I had fractured a rib and was in a considerable amount of pain. Fortunately, I was able to get a prescription for morphine to help me cope. I would not have survived or even enjoyed the trip otherwise.

Thursday, I checked out of my hotel at 8:30 am and had the concierge stow my carry-on so I could do a bit of sightseeing before I flew home in the evening. I took the hotel shuttle to the airport and then waited for a bus company to take me to Hollywood. The bus was supposed to come at the top and bottom of each hour, but for some reason, I waited an hour and a half. The company's other buses kept coming and I would ask each one when the Hollywood bus would arrive and each driver would tell me something different. Obviously no one knew their own company's schedule. Eventually it did show up. The driver was a complete jerk. At one point, he was driving so recklessly, one passenger's hard shell carry-on which he'd told her to stow in the overhead luggage racks flew out and crashed to the floor, narrowly missing her. He was rude and unhelpful and by the time we arrive in Hollywood, I was glad to be rid of him.

I was surprised that Hollywood Blvd was a ghost town. Aside from a small handful of tourists (less than 10, including me) the streets were deserted along the Walk of Fame. When I first got off, I was a bit worried I was in a sketchy part of town, but none of the people bothered me, save for one rather aggressive tour operator who didn't want to take NO for an answer. I said "No thank you." to her at least 5 times while I kept walking before she finally got the message.

I wandered along and went into a shop to see about getting some t-shirts for the family. The shop I went into was perfect-they had really good deals on really nice shirts and the Mexican lady who ran the place was lovely. As I was walking out, I spotted a penny press. My son and I have pressed pennies on every trip we've been on for years. I was pleased to be able to add three more pennies to our collection.

When I'd had enough, I started retracing my steps on the opposite side of the street. I walked right by The Scientology building. I'd snapped a photo from the other side of the street because hey-Hollyweird! As I passed by it, there were a bunch of women with pamphlets standing outside. I think they were hoping to entice people inside to see "The life of L. Ron Hubbard" (as advertised on the window in big bold letters) or something. I wasn't about to make eye contact and just kept going.

Eventually, I spotted a Starbuck's which was oddly comforting-my home away from home. I popped in to get a drink and discovered that in the US, they still sell the salted caramel cake pops! SCORE! I also bought a couple Hollywood mugs there, as I started a collection of these on our trips 6 months ago. So far we have Whistler, Toronto and Hollywood. I made it back to the bus stop just in time to catch the return bus to the airport. The driver this time could not have been any nicer if he tried. I gave him a decent tip when I got off.

I caught the shuttle back to the hotel, had lunch and hung out with some fellow NMO patients before taking the shuttle back to the airport. I decided to go a bit early because I wanted to have dinner before my flight and I had no idea how bad the lines would be at the security screening. As it was. the lines were bad, but I decided to use the accessible line (membership has its perks) and managed to get through in less than 10 minutes. Dinner was delicious-a decent cheeseburger and then a shopped for a couple more shirts for my guys at Rip Curl. I loved the shirts I bought there-they have a huge full moon on them with the California grizzly in the middle of it.

While waiting for my flight, I saw that Delta had had a plane slide off the runway in the eastern US that day. Then, sitting at my gate, the plane at the gate next to me was delayed while mechanics figured out whether or not a rotor blade was damaged on a flight going to Austin. The airline rep who was giving passengers a blow by blow about the problem and the progress in fixing it was not inspiring confidence. Eventually he said "The mechanics think it's probably okay to fly."Probably?!? 

My flight was uneventful until we came to land. We hit the runway hard and then bounced back up into the air. I knew that was not normal and I told my seatmate we were going to hit it hard when we came down again and we did. I was the last person off the plane and I overheard airport staff on their walkie-talkies saying the pilot was requesting an immediate mechanical inspection. If I had to guess, I'd say the landing gear jammed. At least we were able to land safely. Not a good day for Delta. really was a great trip. I learned so much, made new friends, reconnected with old ones and got a bit of sightseeing in on the side. I am really grateful to the Guthy-Jackson Foundation for making it possible. Oh and after I got back, I discovered that Randy Jackson from American Idol attended NMO Patient Day. It's wacky to think that he heard my presentation about the advocacy work I've been doing! Here's a photo of him at the conference. Go figure!

Monday, March 02, 2015

Catching Up!

Hello again! I know it's been some time since I posted. Life has been hectic and intense the last while. Sometimes, you just have to go with it.

I ordered more Moo cards. This time I decided that I wanted to use some of my photography of graffiti to make them. All but the pink "face" were taken in various locations in Whistler. The pink "face" was taken a few years ago of a set of doors on a building in Vancouver that was one of my favourites, but  sadly, is no more. The rest of my Moo cards from this latest set are piece of my art that I like and that I've had printed as Moo cards before. 

I was completely out of cards and wanted to make sure I had some for my trip to LA in two weeks. Moo always has excellent customer service and they were made and shipped lickity split. I LOVE Moo!

If you've never ordered from Moo before and would like to, you can get 10% off your order by following this link.

Here's a gratuitous photo of Indy getting dried off after being out in the rain. He cracks me up. I've never known a dog to love being towelled off as much as he does. He'd stand there all day and let you do it, if you were so inclined. I love his smile. It's too bad it was late at night and so dark when I took this.

If I've been kind of quite the last while, it's because I am dealing a number of things right now. One of those things is an eye issue. I am having significant pain and blurriness in my right eye. I've had my neuro opthamologist look at it and it's not optic neuritis. I trialed a drug and we know if the drug worked that it's exactly what he thinks it is. Well, the new drug did work for the eye pain, but it also created persistent intense headaches as a side effect.  I am unable to stay on this particular drug long term because of that, so I ended up getting off it. It was pretty miserable.

Then, because dealing with my eye wasn't enough, I had an accident last weekend. I got my foot caught getting out of the car and hit the dirt hard. I scared my husband-all he could see was my legs and I wasn't moving. He came flying around to my side of the car in a panic until I said "I am okay." Only it turns out, I wasn't okay-I have badly injured my ribs and am now on morphine while it heals. It hurts to breath, to lie down, to times! So, I am a bit broken at the moment.

I did my yearly interview with a UBC med student two weeks ago. It's always interesting to meet new medical students, tell them my story and then hear what questions they have. I just realised that I've been with this particular program now for 7 years. How time flies! My next meeting with my Health Mentor students is to prepare for the annual symposium which takes place at the end of April. 

I am flying off to Los Angeles tomorrow morning to attend the annual NMO Patient Day put on by the Guthy-Jackson Foundation. I will be speaking about my advocacy work as a Community Rep for the MS Society of Canada and as a UBC Health Mentor. I am looking forward to hearing what's going on in the world of NMO research. I am also looking forward to poking around LA before I have to fly back. I had plans with a good friend, but she had to cancel due to a death in the family, so I'll be adventuring on my own. 

Okay, I'd better go throw some stuff into a suitcase! Catcha on the flip side!

Thursday, January 29, 2015

Good Mail Day!

Look what finally arrived in the mail!! I love good mail days!

Here's a peek at my page & interview questions. My friends Seth Apter & Penelope Harris are also on this book, but aside from those two, all the other artists are new to me, which will make for an interesting read. Art Journal Kickstarter is full of eyecandy and interesting commentary on each of the artists' creative process and it's sure to inspire anyone who loves art journaling. Want a copy for yourself? You can find it here.

Seeing my art between the cover just never gets old. It's a thrill every time! 

Sunday, January 25, 2015

Hello TO!!

Last week I flew to Toronto to meet with the Canadian MS Society's Personnel Grants committee. It's mind blowing that it takes the same amount of time (just over 4 hrs.) to fly 3/4's of the way across Canada as it does for me to drive through the mountains to my in-laws' in the interior.

Along the way, I got to see two of the Great Lakes-Lake Superior (left) and Lake Huron (right). When we were landing in Toronto, I was stunned to discover there was no snow on the ground!! Here I'd purchased brand new snow boots just for this trip and there was nothing! It's a good thing I'd packed a pair of shoes. Crazy!

I took the Rocket bus from the airport to Kipling Station to catch the subway (left) into downtown. It reminded me alot of the subway in NYC. So different from our skytrain here-it's a much older system and runs almost entirely underground. I was also surprised that they have actual people sitting in the subway to collect fares, rather than having automated ticket machines like we do in BC.

It was about an hour from the airport to the hotel I stayed in, which was a Hilton right downtown, just a block away from St. Patrick's station. The photo on the right was my view from my hotel room.

Monday night, the Canadian MS Society took our team out for dinner at The Queen & Beaver. We had a lovely dinner and then everyone headed back to the hotel to rest up for the big meeting the next day. I won't go into detail about the all-day meeting on Tuesday-that's another post, but let's just say it was intense, hugely interesting and I came away with a full heart and a deep sense of satisfaction for the work our team did together.

Wednesday, I had the entire day to sight see before catching an evening flight home. My friend Jenna, whom I write with on NMO Diaries lives in TO, so we finally had a chance to meet. We had dinner together Tuesday night and then she picked me up on Wednesday morning and drove me all over the city. I really appreciated her taking time out of her busy life to be my tour guide. She did a fantastic job.

We started our day having coffee (tea!) at Casa Coffee in this cool little neighbourhood. Jenna said that in the summer, they close the street here to traffic and it becomes a funky street market. I love the indie of this coffee shop-it had a whole old school candy counter at one end and the ceiling was decorated with a ton of globes. The photo doesn't really do it justice. The conversations of the locals were highly entertaining-it's such a small space that you can't help but overhear what other people are saying. I kept catching snippets of things like "She was only wearing a g-sting and a fur coat..." and "Here comes the Russian Mafia!" and "I am totally dressed for fashion week man!". I had to keep my back to the locals because I couldn't stop laughing.

Here's Jenna and I in the coffee shop. I think I need a selfie stick!

 Afterwards, we made our way to the alley ways where Rick Mercer does his rants for his show. Of everything you could see in Toronto, this was the one thing I was most wanting to see. 

The lane ways seem to go on forever. There's so much amazing graffiti and I only managed to see a small fraction of it. Part of that had to do with how cold it was: -13C. It was too cold to be standing around for too long and taking off your mittens to take iphone photos. I might have fared better with my DSLR camera, (I can operate it with gloves on) but I opted not to bring it this trip. I did however record my own rant which I will be posting to Rick Mercer as soon as I get a chance to upload it. Silly but fun!

We did a drive by of the Hockey Hall of Fame, or as die hard Canadian hockey fans would call it, church. (Hockey is a religion in Canada.) Really cool building-Toronto has some gorgeous architecture. 

And then there was of course, the obligatory viewing on the CN Tower. Jenna very kindly offered to take me up, but as we were sitting there on the street, the observation deck was being swallowed up by clouds. No point in going all the way up to see absolutely nothing! I was fine with it-I've done the Space Needle in Seattle, so it wasn't really a big deal to not go up.

I loved the little trolley buses. This shot shows the old ones. The new ones look very much like Japanese bullet trains. I had hoped to find time to ride one, even briefly, but just didn't get to it. 

For lunch, we went to Trattoria Nervosa in Yorkville. It was a really cool Italian eatery. We ordered a traditional Italian pizza and a Caesar salad to share. The selfie (right) was taken in the entryway. I loved the medallion on the floor. The bike was just around the corner in front of one of the many trendy little shops. I had a great time visiting with Jenna and getting to know her. We'll see one another again in early March when we both fly to LA for NMO Patient Day.

Jenna dropped me off at one of the subway stations after lunch and I made my way back to the airport, just in time to get through an enormous backlog at the security checkpoint. Fortunately, I was able to go through an accessible line, which was a life saver. My flight home was rough-we had major turbulence the entire way and I didn't get out of my seat the whole time. Normally, I don't mind turbulence-that's how you know you're flying, but I was feeling a bit under the weather and so it wasn't as much fun as it normally would be. Fortunately, our flight arrived 1/2 hour early, so that kind of made up for it.

I really enjoyed my trip to Toronto. I'd never been before and that's now as far east in Canada as I've ever been. I plan to write about the actual work I was doing there for the Canadian MS Society, but it will be posted over on their site, when I do. 

So...I am home now and playing catch up with various things-laundry, emails, blogging, etc. (Oh the glamour of it all!) I have a few projects in motion that need my attention. I'll be making a list first thing tomorrow morning. No rest for the wicked!

Wednesday, December 31, 2014

As 2014 Fades to Black

Contrary to popular belief, I have not fallen off the face of the earth! I've just been super busy not only with the usual holiday hustle and bustle, but also reviewing 24 grants for the Canadian MS Society. It's alot of very concentrated reading and then equally thoughtful writing. I've managed to get all 24 reviews written and after New Year's I will work on editing what I've written. It's challenging but interesting work.

In between times, I have also managed to steal some time to make myself something! Two weeks ago, I decided I really wanted to make myself a journal for 2015. I took a really old book I'd been saving and started working on transforming it. I bought it originally because it was small, (I love books that fit comfortably in the palm of my hand) it was leather and it had some cool gold hinges printed on the cover.

As I began pulling it apart, I realised that this book was printed in 1914, making it 100 years old this year! Really cool! The middle photo is of the journal lying open to show some of the pages I sewed in. It's about an inch and a half thick. I love a good chunky monkey journal. 

The final photo is how I altered the cover. The photo on the cover is actually a vintage photograph I picked up in an antique store. I loved the strong women of various generations standing in their garden. It called to my prairie roots. I didn't feel bad about using an original photograph because 1. this journal is mine and 2. oddly enough, there were several of the exact same photo in the pile when I bought it, so I bought them all.  I've already been working in my 100 year old journal! (It was just too hard to resist!)

I have begun preparing for my trip to Toronto in late January. (I am flying out to TO for 3 days to meet with the Grants Review committee.)  Unlike the west coast, Toronto has snow. Being a Winnipegger, born and raised, I know all about snow so I knew I would have to get myself a decent pair of winter boots. Before the holidays, I decided to pop into a store just to see what they had. I looked at aisles of the most ridiculous boots-boots that were basically "fashion" boots-not warm and with heels high enough that if you hit a patch of black ice, you were just spoiling for a fractured ankle. NO THANK YOU!

Anyway, getting down to the end of the aisle, I spotted some boots that looked like they would do. They were mostly black with a hint of lime green trim and really good tread. I found my size, opened the box and was surprised to find the exact same pair, but in buffalo plaid!! I love buffalo plaid!! Of course I had to have them and I got the last pair in the store.

(Photo credit Delish General Store)

 The funny thing was that Delish General Store had a buffalo plaid infinity scarf I had been coveting for forever. My husband know this was on my Xmas wish list so Tamara, owner of Delish General Store was able to make sure he got the right one when he came in to buy it for me. I am now suitably outfitted for TO! I shall be warm and toasty! (And stylish!) I am laughing about the boots because living on the west coast where we don't get weather warranting the wearing of snow boots very often, (if at all) my new boots will last me for a very long time. Good thing I love them!

What would Xmas be without a new toy to play with? My son and his girlfriend very sweetly gave me a Fujifilm Instax Mini 8 in vintage aqua. (Pictured on the left.) It's prints credit card sized photos (3 3/8 tall x 2 1/8 wide) which are the perfect size for adding into a journal. The camera is very light weight, since it's made from plastic and measures about 4 1/2 inches square. I think it will tuck nicely into my carry-on bag for my trip. 

Tonight marks a special occasion-my husband and I are celebrating the 25th anniversary of our first date. It's hard to believe that happened a quarter of a century ago. Man, I feel old! In typical Canadian fashion, our first date took place at a hockey rink, watching the Canucks vs. Philadelphia game. (My husband is a huge Philly fan.) We were fated to be together.

Truth be told, I had the best intentions of writing some end of the year, sum-it-all-up post, but just never seemed to find the time to do it, so this will have to do. I want to thank everyone who has taken the time to leave me comments over the last year-I appreciate it! I want to wish you a happy, healthy, creative 2015 and may we all continue to find ways to make this world a better place.

Here's to 2015-may she be a good one!

Wednesday, December 10, 2014

On The *Really* Small Screen

(Filming at UBC in early October, 2014)

Twice this year, I did some filming for a new medical course that has been in development at the University of British Columbia called the Certificate in Collaborative Practice for Health Professionals . This new course is designed to help health care professionals strengthen communication and collaboration skills in order to enhance patient-centred care. I have been serving on an advisory committee that has been helping in the development of this certificate course, along with several of my fellow Health Mentors over the last year. The work has been both challenging and interesting. What I’ve loved best about it is that I know that the work we are doing is going to have a very positive impact on how health care is delivered in our province. 

Yesterday afternoon, I received an email from the project manager that the video component of the course is finally finished and available for me to view online. While I can't show you the videos, I can share a couple screen shots!

In this module, I talk about some of the aspects of my patient experience and the impact those experiences have had. I had the opportunity to acknowledge what an amazing family doctor I have by sharing how she makes a difference in my life by the way in which she delivers care. When it comes to be patient-focused, she sets the bar exceptionally high. I am extremely lucky to have her as part of my care team.

In this second screen shot, you'll notice I've got new glasses and a new haircut. (This section was shot in early October.) In this module, I am talking about my views on leadership within my health care team. Who the health care team thinks is the leader and who the patient believes it to be can be two very different things.

I think it's so sweet how they have the little orange circle on the screen that says "Learn more about our Lelainia". It's clickable and when you click it, up comes a brief bio:

This course is currently available across British Columbia and I've been told that at some point, it may expand beyond provincial borders. I can't tell you what a tremendous privilege it's been to be a part of the team helping to develop this certificate program. I am incredibly proud of the work we have done so far, but we're not done yet! The work continues with our focus shifting to ethics. Again, very important and interesting conversations are happening. I am learning so much, even as I am lending my own thoughts and experiences to the process. 

When I was watching the finished video clips, I was getting teary just thinking about how this is going to change lives. Advocacy is something I am incredibly passionate about and it just gives me so much pleasure to be able to use my knowledge and skills in such a meaningful way.