Begin Again

Hello & Happy New Year! Some of you are probably wondering why I've been MIA. There's a very good reason: 2018 was rough. I struggled with my health all year. By struggled, I mean I spent NINETY TWO out of 365 days at medical appointments. (I'm not kidding.) I'm not going to get into all that though because living through it once was more than enough. Let's just say I was spending what little energy I had surviving. It left nothing in the tank for blogging. Life happens!

We also lost three family members to cancer; one in February, one on Solstice and one on Xmas Eve. To say 2018 was brutal is an understatement. I am glad it's over. I am hoping 2019 is a kinder, gentler year.

Despite feeling terrible, I was still busy behind the scenes. I wrote a couple blogs for The Rick Hansen Foundation. They invited me to write about invisible disability for them. I shared what it's like to have a hearing impairment and after a lifetime of struggling, to finally be fitted with hearing aids. You can read all about it here. In case you missed it, my first blog post about how invisible disability affects my life, can be found here.

I wrapped up my 5th cohort of UBC Health Mentors students in November (I am really going to miss them! They were hilarious and made me laugh.) and began working with my 6th cohort in September. The work continues to be rewarding-I learn as much as my students do and my new students are lovely young women.

I worked with the UBC physiotherapy program in October, helping students get their patient interviewing skills. I've done this twice before and they are a lovely bunch of people to work with. I am going to be working with the program again in a few weeks. This time I'll be helping students learn about assessing patients with rheumatoid arthritis. I did this twice last year and enjoyed the experience, so I signed on again.

I also volunteered to speak with 1st year UBC Pharmacy students about the impact pharmacists can have on people's lives. I figured it was the perfect opportunity for me-I have so many drug allergies, plus I'm complicated and my pharmacists have been invaluable in helping me manage the medication end of things. It was a great experience and it sounds like the students loved it so the program will be expanding next year. I hope to be able to do it again.

Next week I have a phone interview. I've been short listed as a potential patient adviser for a committee that is looking to making improvements to medical imaging. I am hoping to be selected, as I have a wealth of personal experience with this branch of diagnostics and there are some aspects that I feel definitely need some work. I'd be happy to be a part of that process. I want to make things better for everyone. *fingers crossed*

I started a project, using the 1 Second Everyday app. Essentially you do a 1 second video clip every day for a year. It's 1 second out of my day so I am pretty sure I can manage to stick with it and it will be cool to see the video at the end of the year. Anyone want to join me? Let me know if you take this on!

Right before the holidays, I started printing a bunch of the graffiti photos I've taken using my HP Sprocket printer my son gave me for Xmas last year. My plan is to make a book with the prints. I have a fat stack to work with. It's a work in progress.

I treated myself to a couple new stencils from Stencil Girl that I've wanted forever. One is called Tall Reeds and the other is Circles Circles. They got here lightening fast-I wasn't expecting them to arrive so quickly, but I'm thrilled they did. I can't wait to play with them!

Okay, this is a good start. It feels good to begin to get back in the groove. I'll be back soon with  more to share.

Well Hello 2018!

So...my plan to be more present here was all shot to hell by a number of things. That saying "Life is what happens while you're busy making plans." about sums it up.

It started out with my father in law being diagnosed with terminal cancer just after New Year's. We lost him a few weeks later and things snowballed from there. I have been dealing with a whole slew of health stuff, not the least of which was the worst NMO attack I've ever had. It landed me in the hospital for 12 days, where, I promptly caught flu. I have never had flu in my life and had to go to a hospital to get it. Putting someone who is triple immunosupressed anywhere but in a private room is sheer stupidity. Let's just say it was a hellish 12 days and they sent me home sicker than when I arrived. I am still struggling to recover. So far, 2018 has been rough.

On a more positive note, I was contacted by The Rick Hansen Foundation just before Xmas, asking if I would be interested in writing for them about invisible disability. I was very surprised. I didn't even know I was on their radar. Apparently once you've been a Difference Maker, you are a part of the family. I am pleased to share that my first article was published on March 4th, while I was still in hospital. You can find it here. Rick Hansen, for those who aren't familiar is a Canadian icon and one of my personal heros. You can learn more about him here. I am humbled and honoured to have the opportunity to share my story and experiences as someone living with invisible disability, rare disease and chronic illness. 

I have been keeping busy working with my UBC Health Mentor students. In my current cohort, (my fifth!) I have two women and two men. The women are a student in speech & language pathology and a medical student. The men are a nursing student and occupational therapy student. It's the first time I've had male students and I've been enjoying the new dynamic. My students are so great to work with. We laugh a lot and I am really enjoying spending time with them. I am going to miss them over the summer. (After April's symposium, we don't meet till October and our last meeting for this cohort will be in November. The time always whips by so quickly.)

I also volunteered to work with the UBC Physiotherapy program in early February to help their students learn about assessing Rheumatoid arthritis patients. It was really good timing for the students to assess me because I am having a big flare and so they got to see and feel first hand what that looks like. I've worked with the PT program twice before helping students get their patient interviewing skills but this was new to me. I enjoyed learning too. The students in the PT program are such lovely people. I always enjoy working with them. I will be doing more of this type of volunteering in a couple of weeks through the same program, but this time at the local hospital's arthritis clinic. 

Since I've been home from the hospital and still dealing with some serious health issues and having treatment, I've been forced to stick pretty close to home and take things easy. My best friend gave me Rae Massigman's Pocket Journal class for my birthday, so I have slowly been working on my little journal. It's been fun playing with paint. 

My mother in law sent me a cheque for my birthday and I treated myself to some new art supplies yesterday-two stencils, a set of stamps and some cool paper. I haven't bought art supplies in ages-in fact I had recently gone through my stash and purged a big chunk of it. I donated the excess to a friend who teaches art to kids. I know she will put it to good use. I am not a hoarder of supplies. I like to use what I have and there was so much stuff I've had sitting around, taking up space that it seemed like a good time to pare down and reorganize. I am really glad I did it. I have all my paints, stencils and water soluable oil pastels in one of those Ikea rolling carts. Best thing ever! I can roll it right up to my desk and have everything I need right there. I can also roll it out onto my patio in the summer and spend the day creating outside. My plan is to get a nice patio set (small table & comfy chairs) so I can have an outdoor studio by day and a nice place to have dinner al fresco by night. Indy likes to spend most of his time outside on the patio when the weather is warm and I think I would like that too. My patio has a big shade tree in front, so it stays nice and cool out there. I am on the hunt for the right furniture to make this happen.

My best friend and I went to see Isle of Dogs last weekend. I wanted to see it for the art. It's a Wes Anderson stop motion animation film. I wouldn't say it's for kids-I think they'd quickly be bored. It's aimed more at fans of the genre. Lots of big names in this one. What surprised me was that it was about 2 hrs long. Usually with animation, the films are much shorter, so well done Wes Anderson! The are billing it as a comedy, but while it had some funny moments, I didn't think it was, really. My favourite line in this film was "Fear had been mongered." I enjoyed it and if you like this sort of thing, you'd better go see it before it's out of the theatres. 

So that's the Cliff Notes update of where I've been and what I've been up to. I am going to make a concerted effort to get back into regular blogging. Back soon!

2016: Year In Review

Hello to those of you who have hung in, waiting patiently for my return to blogging. It's been a tough year for me physically, so that's why the extended absence. Anyway, not being one to dwell, here's what 2016 looked like:

January:

-My friend Sam Bradd spoke about life as a graphic recorder at Creative Mornings Vancouver.

-I returned to Toronto to do my second term as the Community Representative for BC. This time I was doing grant reviews for Community and Population Health for the MS Society of Canada. I got to have dinner with my NMO sister, Jenna, which was a bonus.

-I won a class with Vivienne McMaster on iPhoneography. I took this shot, which she like so much she used it to promote the class since.

-Inspired by that class, I dove back into photography. I took this shot shortly after and I love the odd perspective.

February:

-I won a class with Tara Leaver called Oracle Cards and made a deck of mindfulness cards from gelli prints I made.

-I won tickets to the premier of Race about Jesse Owens from the BC Sports Hall of Fame.

-I got new ink-my campersand tattoo which was an Xmas gift from my son. Every time I look down and see it, it makes me so happy.

-Husband and I enjoyed the warmer temps with a trip to Granville Island. (The tree was decked out for Chinese New Year.)

March:

-I flew to LA for 3 days for the NMO Patient Day. I had a great time connecting with my community. I also tried Uber for the first time.

-I screened for a clinical trial. After jumping through extensive hoops, I was excluded from the trial, which was very frustrating.

-For my birthday, I took an online class with Roxanne Coble called Creatures. Playing with paint is always so much fun.

-My husband and I celebrated with surf and turf at the Keg.

April:

-My friend Isabel treated me to an evening at the VSO featuring Canadian astronaut Commander Chris Hadfield. This goes down as one of the best musical experiences of my life. I am still listening to Holst's The Planets: Jupiter.

-We started taking Indy up to the lake-it was finally warm enough.

-We went to a belated birthday dinner for me at Storm Crow Alehouse. Love Han Solo in carbonite!!

-My Health Mentors students and I did the annual symposium.

May:

-I spoke at UBC at the Operation Med School about the work the MS Society of Canada does and about NMO. I did an interactive piece where students could experience some of the symptoms people living with MS and NMO deal with on a daily basis which was a huge hit.

-I also gave a short speech to Port Coquitlam City Council and accepted a proclamation from the Mayor on behalf of the MS Society. My husband came along and this was the first time he's heard me do public speaking. Afterwards, he said "I could never do that!" It gave him a quick glimpse into some of the advocacy work I do all year long.

-I started a lettuce and herb farm on my patio.

-I took this wheelchair photo on False Creek, which is one of my most favourites this year. I call it "Gone Paddling". It speaks to ability.

June & July:

(Lumped together, because by this point, I was very unwell.)

-Another most favourite photograph of Indy up at the lake. I love that it's partly out of frame and shows him wildly swinging his water Kong and his teeth. He is in utter bliss retrieving and swimming.

-Vivienne gave a talk on self-love at Creative Mornings Vancouver. Even though I was feeling terrible, I wanted to go to support her.

-I won a class with Bella Civoric, Holy Hush. This was the kit that went with the class.

-We made a few quick trips to the Farmer's Market to get fresh veggies. I always love supporting our local farmers.

August:

-After suffering with brutal tendinitis in my right arm for 8 months (at this point) the brilliant arm surgeon decided I just needed a custom moulded brace. *sigh* Here it is now the last days of December and I am still in pain. *SO* not helpful.

-Spending 14 weeks in bed over the late spring and entire summer had one bright spot-the Olympics & Paralympics were on. It cheered me greatly to watch our women's footie & rugby 7's win bronze medals and to watch WC Rugby.

-At the tail end of August, I started on Rituxan infusion to treat both my RA and NMO. Making the shift in treatment was weird.

-I actually managed to eek out a wee bit of art during this time, inspired by Mandy Stewart.

September & October:

-Husband and I went on a date to a new local bakery, Gabi & Jules who do amazing pies. They sell at our local Farmer's Market and just opened their brick and mortar store. It's great to have such a nice place to have tea and pie when the mood strikes.

-I had the opportunity to visit the Museum of Anthropology at UBC for free and to take a tour that talked about activism and art through the Creative Mornings Vancouver Field Trip program. I have had a visit to MOA on my life list forever and this seemed like the perfect time to do it. I left feeling super inspired by everything I saw. It's the kind of place you can return to again and again and see something new or see something in a different light each and every time.

-Autumn weather finally arrived and with it, cooler temps, which I was grateful for.

-We celebrated my husband's 60th birthday, which given the last few years of very serious health issues, is a milestone that at times I didn't think we'd see. A week later, we celebrated our 26th anniversary.

November:

-I started off the month with a few days in Seattle with my best friend, who was having cornea transplant surgery. It was interesting to see how the US health care system works. One tiny bottle of eye drops cost over $200 down there. It would have been $35 at home. *boggles*

-I volunteered at the Women Against MS (WAMS) annual luncheon and got to meet Canadian soccer two time Olympic bronze medallist, Christine Sinclair. I am a huge fan of women's footie! Loved crossing that off my life list!

-The MS Ambassadors had their annual forum at UBC. It was a great day connecting with fellow ambassadors, learning about the changes being made to how the MS Society operates and to hear about some current research being done.

-UBC NMO Patient Day was also held in November.

December:

-The first week of December I flew back to Toronto because I was invited to attend both HEARMS Day and the ENDMS conference. It was an incredible opportunity to connect and learn with researchers from across Canada and from around the world. It goes down as one of the best experiences of my life. I will be writing more about it in the new year. 

-I finally got a chance to meet my fellow SomeoneLikeMe.ca blogger, Juan Garrido. We've been writing for the blog for together for over 4 years, so it was really wonderful to finally spend some time with him. 

-I also reconnected with Dr. Sam Davis, who is a professor of neurology and neurosurgery, as well as a researcher at McGill University. Sam was the Chair of the first grants review committee I served on (Personnel) and is such a kind and lovely man. We caught up over breakfast. 

-I also got to catch up with the fabulous Dr. Karen Lee, Vice President of Research for the MS Society of Canada. She's expecting her first baby in the spring and I'm so excited for her!!

The rest of my December was snow, (which is unusual for Vancouver and the surrounds. It started the day I left for Toronto and pretty much has continued ever since. We are more than ready for it to be gone.) baking & celebrating. 

New Year's Eve will mark 27 years since our first date. (A hockey game-what else? We are after all, Canadian.) It seems crazy to think it's been that many years.

 All in all, it's been a challenging and very full year.

Happy New Year everyone! Here's to 2017 being kinder, gentler.

It's The Most Wonderful Time Of The Year!

Happy Autumn everyone!! My most beloved season is finally here!! YAY!! The weather has been absolutely gorgeous-cooler, but beautifully sunny. It makes me so happy to watch the turning of the leaves and the changing of the light.

It's been a busy time in the last week or so. I met with my new cohort, my 4th for the UBC Interprofessional Health Mentors Program on Monday night. This time my students are from medicine, nursing, OT and kinesiology. They are a lovely group of young women and I am excited to be working with them. My 3rd cohort has two more session and then they are done. Hard to believe we're at that point already!

We have been sticking pretty close to home as my husband is still recovering but we've managed to take Indy for a dip in the lake from time to time. He is never so happy as when he is swimming and retrieving. Now that the summer drought is over and we've had a decent amount of rain, the lake has been fairly high which makes for better swimming for him.

Thanksgiving is next weekend. I am going to be baking pies this weekend in preparation. Turkey is my favourite meal, so I am looking forward to it. Our best friends and our son will be joining us. This year has been really rough, but we still have plenty to be thankful for-we are all still alive and together and before the month is up, we will be celebrating our 25th wedding anniversary. That's a pretty big deal. 

In case you missed it, there are zines available in my Etsy store-issues #3 & #4 of Manual Dexterity. Issue #3 is Hallowe'en/Autumn themed and includes my secret recipe for THE BEST pumpkin pie! You can find them here.

Happy Fall Y'all! 

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 move...fun 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!

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.

Can YOU Help?

So you've heard me talk about the UBC Interprofessional Health Mentors Program and what an amazing and rewarding volunteer experience this has been for me. (So much so that I hope to do a third cohort with the program!) I have only glowing things to say about the faculty and the students I  have had the pleasure to work with.

What I wanted to share with those of you who are local (living in the Metro Vancouver area) is that the program is in URGENT need of Health Mentors. I am putting the call out here in the hopes that some of you might be moved to step up and help shape the future of health care.

If you are someone who lives with a chronic illness or disability or care for someone who does, I urge you to share the benefit of your experience by applying to become a Health Mentor. I promise you, your story matters! Please take a moment to watch this short video that gives you an idea of the kind of impact you can have.

Inspiring, isn't it? Applications are being accepted for the program until July 31st, 2014 for the 2014/2015 session. You can click here for more information about becoming a Health Mentor. 

If you have any questions about my experience, feel free to get in touch by leaving me a comment and be sure to indicate an email address so I can respond. I'd be happy to talk to you about it. If you know someone you think would be a great Health Mentor, feel free to share this post with them! Thanks peeps!

Scenes From A Weekend

Thursday night, dinner with my husband at OSF. We love their BamBam Shrimp. So nice to not have to cook after a long commute to UBC. I had an interview with a doctor/professor who is here from the UK to learn about the Health Mentors program and see if it's something that can implement in their country to better the education of their health care professionals. It was a fascinating conversation and I'll be interested in hearing what the outcome is. Amazing to think Health Mentors here are potentially having an impact on the future of health care in the UK!

Friday: We were up and out early to Granville Island since this was the only day forcasted as sunny this weekend and we wanted to spend as much of it outdoors as possible. Indy got a good walk, I got to shoot some photographs, (Don'tcha just love this graffiti?) and we all got to lunch in the sunshine. It felt so good to soak up some vitamin D! The innumerable ornamental cherry trees that are so common here are thick with blooms. Their branches are hanging low they are so loaded.

Of course what's a trip to Granville Island without a wee bit of retail therapy? I discovered that The Cloth Shop has moved to the island-not sure why I hadn't noticed it there before...granted, it is tucked away on a back corner, so it's not entirely obvious. Anyway, they have evolved into a store that is carrying mostly modern style fabrics! I had to have this piece which seemed so collage-y to me. It kind of looks red in this photo, but it's actually a very vibrant orange. I even love the salvage! Really, I wanted to buy more, but I'll visit again next time I'm out there.

I've been looking for these stamps for awhile now and happened to spot it at Paper Ya yesterday. $14 for this charming set.

Too cute! I like that it reminds me of pictures from a 1950's reader.

I made granola from scratch yesterday afternoon. I had some for brekki this morning. It was delicious. 

Today I am taking my husband to this amazing Italian grocery I just found out about and then I am meeting a friend for coffee on Commercial Drive. (A trendy/funky part of town.) It's already been a busy weekend and it's only Saturday! I see a nap in my future!

P.S. Some exciting news is *almost* read to share...stay tuned!

Playing With Paint

Last Sunday, my friend Penn hosted a Gelli printing party. There were 10 of us playing with paint and munching snacks and having a really good time.

I bought a whole bunch of new stencils for my birthday, so I got to test drive them. I also shared them around so others could play with them. They are all nice and painty now.

These are a few of my prints. The wonky circle has become my new favourite. 

I've just set up my studio for the 6 week online painting class I am taking with Mati Rose. It begins on Saturday and was my birthday gift to myself. I can't wait! I just need to run out and get 6 canvasses, since we'll be painting one a week. 

I am excited about this class because while I've taken a few layering classes, I've never actually worked on a large canvas before. I have no idea if I'll even be good at this, but I'm excited to find out. Every time I do something outside of my comfort zone, I love the part where I get to uncover things I didn't know about myself-talents I didn't know I had, personal insights or fresh creative ideas that just pop into my head. That for me is the thrill of learning. My goal is to create at least one painting that I would like to hang in my home. I'll let you know how that goes!

In other news, I am preparing to speak at the Canadian Association of Neuroscience Nurses conference in a couple of weeks. I'll be sharing my experience of NMO. I am also working with my Health Mentor students to prepare for the symposium that happens at the end of the month. It's a busy time!

This morning I had a conversation with someone about a very cool opportunity they wanted to offer me. I've accepted and will share more about that soon.

Good Things!

I thought I would do a quick catch up before the holidays. I've been scarce around here, not because things aren't happening (they are!) but because typing is quite uncomfortable right now. The incision in the heel of my hand hurts, alot. I am taking some special neuropathic pain medication to try and calm the nerves so my hand doesn't feel like raw meat all the time. (I know that's a rather ugly description, but try living with it-it's the kind of pain that forces you to think about it every second of the day. Not fun.)

Anyway, in the good news department, I have the following to report:

My husband and I attended his company Xmas party. Prior to the party, the boss sent a note home asking that the men submit their wives' wish lists and maybe they would receive something from it. Less than half the guys read the note and did this. When the boss called those that had to come get the gifts for their wives, my husband came back with two boxes for me. As I started ripping the paper off the first one, I realized that it contained an iPad mini. The second box held a wireless keyboard for it. This was the only thing on my list and I had hesitated to let them know-it seemed like just too big an ask. We both got teary over their amazing kindness and generousity. This gift makes a huge difference in my life in terms of accessibility. I can now take notes at meetings-something that was impossible for me to do before. It will make the work I do much, much easier. I am so very grateful.

This week I won a box of turona chocolates from Purdy's, a BC chocolate company. When I was 16 and lived in Barcelona, I tasted turona for the first time and instantly loved it. It's a special chocolate that is sold during the holiday season in Spain. They are shipping it to me, so I am looking forward to a good mail day soon!

I also got an email about the work I submitted for a book, which was accepted a couple months ago. The author told me which pieces are going to be included in the book and I am really pleased with what she chose. The pieces were made using antique photos of my extended family. Yay! The book will be on shelves in the spring of 2015.

In January, I'm going to be doing some filming. I am going to be part of an educational video for a new medical program at UBC. I've been serving on a Health Mentors' advisory committee since September. The program is to help established health care professionals develop and strengthen their skills around patient-centered and collaborative care. I'll be filming my thoughts and experiences on this subject. For the first time I'll be using a teleprompter-I wrote the "script" (my answers to three questions on the subject) and it will be run to remind me what I want to say. This should be interesting, since I usually just speak without a speech or notes when I am presenting. Hopefully everything will go smoothly!

Before I sign off for now, I wanted to share with you a song I downloaded from the Indigo Girl's new Xmas album, called There's Still My Joy. I'd never heard this song before. It's wistful, sad and hopeful all at once. 

Here are the lyrics to give you an idea of what I mean:

I brought my tree down to the shore

The garland and the silver star,

To find my peace and grieve no more

To heal this place inside my heart.

On every branch I laid some bread

And hungry birds filled up the sky.

They rang like bells around my head

They sang my spirit back to life.

One tiny child can change the world.

One shining light can show the way.

Through all my tears, for what I've lost

There's still my joy,

There's still my joy for Christmas day.

The snow comes down on empty sand,

There's tinsel moonlight on the waves.

My soul was lost but here I am

So this must be amazing grace.

One tiny child can change the world.

One shining light can show the way.

Beyond these tears for what I've lost

There's still my joy,

There's still my joy for Christmas day.

There's still my joy for Christmas day.

Go download it from iTunes. I promise you it's beautiful.

I wish each of you a beautiful holiday season, however you choose to celebrate. 

A Secret Project

Tonight I have my last meeting with my first group of students for the UBC Interprofessional Health Mentors Program. When I first began working with them, this day, 14 months in the future, seemed a long way off. It really blew by quickly!

I had the best time working with my students. I believe I learned just as much as they did from our conversations. It was really interesting to share my story about my health journey with people who don't know me and then listen to their observations. It's given me a whole new perspective. 

Anyway, back in January, one of the parts of the syllabus we covered was my life story. I didn't think giving an oral history of my life was going to be terribly engaging for them or for me, so I decided to do a trunk show of some of the things that are significant to me. I took my Paralympic Torch, my medal from the Rick Hansen Relay, my Queen Elizabeth II Diamond Jubilee Medal and a whole bunch of my art. My students were very taken with the ROD journals I'd made, so I embarked on a secret project to make one for each of them. They are approximately 4 inches tall x  3 1/4 inches wide. I decided to make the cover sort of like a torn bandage and then added a wool felt red cross to the front cover.

Inside the pages are a collection of various interesting papers and I've added ephemera reflective of their professions-Doctor, Nurse, OT and Dentist. It was fun looking for images and bits of text that were appropriate and I hope they will love the personalization. Since I collect vintage medical ephemera, it wasn't too hard finding things in my collection to use.

Here they are all wrapped and ready for giving tonight. It's going to be weird not seeing them on a monthly basis anymore. I am working with a new group already (there was a 3 month overlap) but I will miss my first group, for sure. I can't wait to watch them unwrap their gifts!

There's a quote by Nelson Henderson, that really sums up what this experience has been like for me:

The true meaning of life is to plant trees 

under whose shade you do not expect to sit.

A Gratitude Post

Some days, are very good days. Today was one of those. It started with some words of love from my best friend, who sent me a note just before I walked out the door and into my day this morning. It said "You are a mensch girl!" That's pretty high Yiddish praise. I love her for it. She has a knack of always saying the right thing to me at the right time, in exactly the way I need to hear it. Everyone should have someone in their lives that does that.

I spent the day out at UBC speaking on two patient panels which I was more than happy to do. Any opportunity to speak to medical students about NMO is a good one. When I got there, I bumped into Stacy from the MS Society who had some very kind words for me about my presentation at NMO Day last week. It's very gratifying when you share something you are passionate about and people respond to that in the way you had hoped. It's especially sweet when they are moved to tell you you did a good job. I am so grateful for that. 

When I got home, there was an email telling me that some work I submitted for a book that's coming out in the spring was accepted. I can tell you that publishing never gets old. It's always a thrill to get those emails saying "You're in!" and then later to get a copy of the publication and see your name and your work between the covers. It's an honour and a privilege and it's extremely humbling.

I think though, the very best part of my day was walking in the door and being greeted with so much love and joy by Indy who clearly missed his mum. No greeting beats that of loyal dog-he practically turns himself inside out with happiness to see me and the feeling is 100% mutual. If you want to know what real, unconditional love is, get a dog. It will change you forever.

So yes, today was a good day. I'm going to tuck this one into my heart.

NMO Day 2013, Vancouver

Top: NMO Day Venue, the beautiful VIFF Vancity Theatre

Bottom: (L-R) Nancy Reimer, NMO Advocate, NMO Walk/Run Organizer

Dr. Katja Van Herle, Guthy-Jackson Foundation

Dr. Tony Traboulsee, Neurologist, Researcher, NMO Specialist UBC

Lelainia Lloyd, Advocate, Health Mentor

Last Thursday was NMO Patient Information Day here in Vancouver. As I've mentioned before, I was presenting about the Health Mentors Program. It went very well. There was alot of positive feedback and I was able to hand out pamphlets to people who were interested in applying to be Health Mentors next year. I actually ran out of pamphlets!

My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son's battle with NMO, it brought me to tears. Kids should not have to deal with life threatening illness!

Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It's easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF's NMO Day in San Diego next year. I would love to connect with the larger NMO community in person.

The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well. 

I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! That's my hand on top and the rest belong to members of my support group. I shot this about a year and a half ago. So far it's been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

Yesterday I had to head out to UBC for a neuro appointment. When I arrived, one of the researchers was at the front desk and immediately greeted me and told me what a great job I did on my presentation. When the neuro fellow came to get me from the waiting room, she told me she'd heard great things about my presentation. I wasn't expecting this, but it made me feel really good to know I'd had an impact. The feedback has been very positive. I really love doing advocacy and awareness work.

This is Annie, one of the NMO researchers at UBC. Without her hard work, NMO Day would not be possible. She is a dynamo at pulling everything together and such a kind and lovely person. We adore her!

So...that's the scoop from the 2nd annual NMO Patient Day here in Vancouver. I'm so grateful to live in a city where connecting to others living with this rare disease is possible. Together we are stronger!

Catching Up!

(Graffiti I spied yesterday!)

Hello! It's been awhile since I last posted. I've been uber busy! May was a whirlwind and somehow that managed to spill over into June. I have had next to no time in the studio so far this month. Instead I've been running back and forth to doctor's appointments interspersed with socializing and a day or two of much needed down time.

Last night was the first Popluck flash mob picnic of the summer. (Or last one in the spring, depending on how you want to look at it.) We had a great time and saw a few familiar faces from last year. It was held in the square beside the Law Courts in New Westminster. The food was delicious and we got to meet some new people, which is always fun. Now we're just waiting for Al Fresco to launch theirs.

I received an invite from the UBC Health Mentors program to help interview potential Health Mentors over the summer. They are recruiting for 2013-2014, so if you live in the Lower Mainland and either live with chronic illness and/or disability or are a caregiver to someone who does and are interested in volunteering with the program, give me a shout and I'll put you in touch. I can't say enough good things about the program, it's value and the students and faculty involved. It's having such a positive impact.

I am about to embark on a *secret project* in the next week. It's something pretty big, but I can't say any more than that. It's really cool and a great adventure which I will share with you when I am free to do so. (It will be awhile, so you'll have to be patient!) Let's just say it's one of those life list things. *wink*

Next weekend in the wrap up for the volunteers for the FCM conference. The city is renting out a theatre and treating us to an afternoon at the movies. I'm looking forward to catching up with friends. The following Sunday, I have tickets (which I won from Vancouver Jazz Festival!) for Shane Koyczan. I just *adore* him! He's playing with Short Story Long at the Vogue. I've invited my friend Jenn to come with me. I can't wait!

I am grateful to have so many good things going on right now, to try and distract me from the fact that I am having to have treatment again. *sigh* Steroids, as my friend Nancy puts it are Satan's tic tacs. They are extremely hard on the body, but a necessary evil. I am doing a high dose pulse with pills (as a concession to my complete unwillingness to give up my plans to NMO right now) but if my neuro isn't happy with the results after 10 days, I will have to go in and do 3 (or possibly more) days of IV steroids. I'm battered, but unbowed and forging ahead through sheer force of will right now.

I have an art date in Early July with my pal Carol and we're going to spend an afternoon Gelli Printing, so there WILL be art on this blog again eventually! I've been stocking up on paint because I know once we start, we're not going to be able to stop! Oh and I should also mention that the fabulous Mary Ann Moss has a new class launching soon, called Sewn. The talented Roben-Marie Smith also has a new workshop, You've Got Mail...Art! which looks amazing. Both look like a lovely way to while away the summer!

Okay, must run! It's Father's Day and my darling husband is waiting for me to make him a special brekki. We're taking him out for lunch later at Granville Island. I'm hoping to shoot some nice photos of him with our son.

Catching Up

Always on My Mind

I am very lucky: my son gave me an iPhone as an early Mother's Day gift. I wasn't in the market for one, really, but my old phone, a 6 year old LG Chocolate Spin (which I loved and was the top of the line in touch phones when I bought it) had pretty much given up the ghost. It was no longer holding a charge and my son knew this, so he decided it was time I got an upgrade. I love it though it's going to take some getting used to the phone part-I liken it to talking on a calculator. It's just a bit odd.

I am having fun figuring out how to use the camera along with various photography apps and at long last, I've joined the rest of the world on Instagram. I've been trying to make a link button for the sidebar of my blog, but the hotlink for it refuses to work so I've put that on hold for a bit while I mull over why it's not linking properly. Eventually I'll figure it out. In the meantime, I'm under Tatterededge if you want to link up there. I've got a grand total of two photos posted so far, but there will be more soon!

In other news, I am super excited to share that I will be one of the featured subscribers in the next issue of Uppercase. (#18!) If you're not familiar, there are usually 3 subscribers featured in each issue with a little interview of about half a dozen questions. Editor Janine Vongool put a call out and I thought "Why not?" So there you have it! 

I am also happy to report that the first ever Canadian NMO 5 km walk/run is up to 250 registered participants! This is really wonderful and I am so pleased for Nancy Reimer, who is organizing the event. It's so wonderful to know so many people care and are willing to show up and support those of us living with NMO. 

I am also thrilled  to share that MV-1 Canada has kindly and generously stepped up as a corporate sponsor. THANK YOU MV-1!!! They are a lovely bunch of people, committed to making a difference in the lives of people who live with disabilities and we really appreciate their support. In case you missed it, they've put together an inspiring e-book, Life Without Compromise which you can download for free here. I am very proud to be a part of it. MV-1 Canada can be found on both Twitter and Facebook, so please show them some love.

There is still time to register for the walk/run. More info about the event can be found here and you can sign up here. If you are unable to attend and would like to make a pledge, you can do so here. Pledges in any dollar amount are greatly appreciated! On the day of the walk, I will be volunteering and speaking briefly during the welcoming. Please come by and say hello!

Other than that, I am busy writing articles and volunteering. I'm volunteering for the first time politically. Someone I know quite well is running in our provincial election and I thought it would be an interesting experience.

I am also busy prepping for the Interprofessional Health Mentors Symposium out at UBC on Monday. My students and I are going to be presenting what we've learned as a group so far. I am looking forward to seeing what the other groups have been up to as well. Members of the public are invited to attend so if you'd like to see what we've been up to, here are the details: 

Date: Monday, April 29th, 2013

Time: 6:30-7:30 pm 

Location: In the West Atrium, 

Life Science Centre, 

2350 Health Sciences Mall,

 UBC Campus 

The 2012-2013 pilot project includes 51 health mentors and 200 students from nine different health professional programs (audiology, dentistry, dietetics, medicine, nursing, occupation therapy, pharmacy, physical therapy and speech-language pathology). At the symposium, the groups summerize and share their learning with other UBC students, faculty and community. The event includes poster board displays by each of the 51 groups and the opportunity for guests to talk with students and mentors about their experiences in the program. Guests can also learn more about this new initiative and how they might get involved.