Allies & Advocates: Partnering for NMO

I am always eager for the opportunity to advocate and raise awareness for this rare disease I live with, so when I was contacted by the Canadian MS Society in mid-April, asking if I would be interested in speaking to a pharmaceutical company about living with NMO of course I said yes.

I prepared a powerpoint presentation to share. I was glad for all the selfies I’ve taken of various health care experiences I’ve had-screening for clinical trials, having plasma exchange (PLEX), infusions of biologics and so on. It allowed me to visually underscore the kinds of things I deal with on a day to day basis in a way that mere words cannot.  

Arrangements were made and I flew out to Toronto. I was treated to an amazing Italian dinner with my hosts, who were the organizing committee for Alexion’s meeting. We talked about my experience as an NMO patient over dinner and I got to know each of them. I’d been a bit nervous about walking into a situation where I didn’t know anyone, but I needn’t have worried-they were so warm, friendly and funny, it was like hanging out with old friends. They completely set me at ease and the time just flew by.

St. James Anglican Cathedral, Toronto

The next morning, I walked over to the conference centre, which was a couple of blocks from my hotel. The conference centre is housed at St. James Anglican Cathedral, which is the oldest church in the city. It was built in 1850 and its congregation dates back to 1797. The white brick and sandstone buildings are beautiful. Breakfast was waiting when I arrived. After a lightning round of introductions, I grabbed a quick bite and then the meeting was underway. 

The general manager of Alexion Canada made his opening remarks. While he was speaking, I could hear this odd squeaking sound behind me and I kept wondering who was doing what while he was speaking. When I finally turned around to see what was going on, I got the most amazing surprise-it was a graphic recorder-the squeaking was the sound of her pens on the whiteboard she was working on. Graphic recorders capture people’s ideas in words, images and colour as they’re being spoken. They create a visual representation of the collective wisdom of the group and allow information to be processed in a new and dynamic way. I have a friend who owns a graphic recording company and he travels the world doing this amazing work. I knew the value of this practice and as an artist, I was super excited to be able to experience it first hand. 

Angela Covert, from the MS Society of Canada spoke first, explaining the MS Society’s role in supporting NMO patients. In 2014, the MS Society very generously took neuromyelitis optica (NMO), transverse myelitis (TM) and acute disseminated encephalomyelitis (ADEM) under its wing as allied diseases. Patients with these diseases are often initially mis-diagnosed with MS and thus many of them are already connected with the MS Society. This move has allowed anyone with an allied disease to access the same support services as those living with MS, which is enormously helpful. Angela mentioned that up to this point in time, the MS Society has not had a huge demand from the NMO community for services, due largely to what we’re guessing is simply a lack of awareness, but I spoke to her afterwards and we are going to partner to see what we can do to change this.

Next it was my turn to speak. Since I was telling my story, I didn’t write a speech, but made some notes of some key points I wanted to make, so I wouldn’t forget. I talked about my 29 year journey to diagnosis, the impact of NMO on my life, the litany of drugs and treatments I’ve cycled through (some of which had disastrous results),  the extensive list of specialists on my care team, the ways in which I participate in research to help move the science forward and the ways in which I serve the MS and NMO community. 

Photo Credit:Angela Covert

To balance things out because I’m not just a patient, I felt it was important to share a bit about who I am as a person. I talked briefly about being an artist, a lifetime volunteer and a wife and mother. I closed with sharing that it was the one year anniversary of the loss of a friend who also had NMO. Of course I couldn’t verbalize this without getting emotional about it, because every loss in our community is personal and I feel it very deeply. It makes me desperate to work harder and faster to do everything I can so we don’t lose anyone else to this devastating disease. Afterward, I was asked if I’d realized that I had everyone in the room in tears. That was a very powerful moment.

My story as interpreted by the graphic recorder.

It wasn’t until I finished speaking that I remembered there was a graphic recorder in the room and I was delighted to see how she had interpreted my story. She did an amazing job! I love that she was able to capture the essence of my story in such a compelling way. I also loved how she drew a cartoon me. I’m such a visual person and seeing how my message came across to others was really enlightening. 

It’s taken me some time to write this because I’ve been thinking about this whole experience a lot. I am so grateful that I was given this opportunity. The people of Alexion have succeeded in getting a drug for NMO through clinical trials, which is utterly amazing.  As much as I was at this meeting to help educate them about the patient experience, I also learned a lot about Alexion as a company and the individuals who work there. Like any science, the work they do is challenging. Research and drug development takes time and time is money. I think too often we forget that there are good people working in what we’ve come to think of as “big pharma” who genuinely care about people living with rare disease and who want to make a difference in our lives through the work they do. It was important to me to thank them for being our allies-I don’t think they hear this often enough from the people whose lives their work directly impacts. 

Having had the opportunity to meet and get to know the team at Alexion, I feel enormous gratitude that they’ve taken NMO on and have had a successful clinical trial. All of the drugs we’ve used so far-Imuran, Cellcept and Rituxan have been off-label use. Once you cycle through these drugs, either because they’ve stopped being effective or the side effects have become problematic, you’re out of options. Not having options can have devastating consequences-NMO left untreated causes blindness, paralysis and in the worst case scenario, death. Having drugs specifically developed for the treatment of NMO opens up more options and options equal hope. You cannot put a price tag on hope. On our worst days, this is what keeps us going.

Disclosure: Alexion paid for my travel costs. All opinions expressed herein are entirely my own.

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.

Nothing Is By Chance

So...back in early December, I broke a tooth. In less than 24 hours, I had an infection. I happened to be out at UBC the next day for a CIRCLES blood draw and an advisory meeting, so while I was there, I popped into Urgent Care to get some help. (Which in this case was antibiotics.)

Any time I interact with health care professionals, I tend to have to give them a crash course in NMO because 99% of them have never even heard of it. In this case, it was important because I am immunosuppressed, so getting an infection was a big deal. The folks at urgent care were super nice and I was a bit stunned that in less than 10 minutes from the time I walked in the door, I was being seen.  I was in and out in less than half an hour. That never happens!

Landon, the nurse who was looking after me was really interested in learning about NMO when it came up as I was giving my medical information. I love sharing information when someone is open to learning from their patients. You know you're in good hands when your health care providers listen to you and treat you as a partner in your care. As a patient, that level of respect is deeply appreciated. We had a good talk about NMO and I gave him my card so he could connect to NMODiaries and the Guthy-Jackson Foundation.

In mid-January, I received an email from Landon out of the blue. It turns out, he does a medical podcast about ER nursing called NursEM, which has subscribers worldwide. He next podcast was going to be on MS and he felt that it was important to talk about NMO since people with NMO are often mis-diagnosed with MS. Because NMO is so rare, he realized that it was likely someone would know his patient was me, so for confidentiality reasons, he wanted to ask my permission to talk about our paths crossing. I knew his podcast would help spread awareness for NMO, so of course I said yes.

Last night, the podcast went live. It's available in both English and French and you can download it for free here. It's episode #14 MS/NMO. He and his co-host begin by talking about MS being Canada's disease and about some research Dr. Traboulsee at UBC is doing. Landon talks about NMO around the 18 minute mark, but it's worth listening to the whole podcast. 

If you'd like to learn a bit more about Landon, you can read about him here. I just discovered he's a Queen Elizabeth II Diamond Jubilee medal recipient too! Small world!

You just never know whose path you are going to cross! I am grateful to have met Landon and that he chose to take what he learned from our meeting and share it with a wider audience. Someone listening to his podcast could use that information to help an NMO patient in an ER room somewhere, someday. Awareness is everything and allies are priceless.

Good Things!

Hello! Hello! I hope things are going well in your little corner of the world! It's been a very challenging summer. Last week, as if we didn't have enough excitement around here with health issues, mother nature decided to have a go. We got a major storm here on the west coast with 80km winds and rain. Trees went down all over the place-two went down across the street at the neighbour's and took out his fence and the rear window of a car parked across the street. In a matter of minutes, surrounding neighbours came with their chainsaws and handsaws to help. The trees were blocking the road (and the bus route) but they were able to dismantle the downed trees enough to clear the roadway. I live in an awesome neighbourhood!

We also lost power at noon on Saturday and it wasn't restored until late Monday night. We lost the contents of our fridge and deep freeze. It took us 3 hours to clean that up-you can't just put everything in a garbage bag and toss it out. Because of environmental measures here, you have to separate food from packaging. The packaging has to be rinsed and recycled and the food goes into the green recycling bins. Let's just say dealing with dead spoiled fish is not fun. YUCK! It was challenging restocking our fridge too-many of the local stores were also without power for days, so they lost all their perishables too. My fridge is still pretty empty, but I'm working on it. The good news is we got much needed rain and we are okay. We played alot of cribbage, burned candles and when it got dark, made our way around with flashlights. We were completely off the grid at home-no power, no lights, no hot water, no Internet. It was like indoor camping for 3 days.

Now that things are back to normal, I wanted to share that I've finally got copies of my latest zine, Manual Dexterity #4 available in my Etsy shop. I also had a few people ask me about Manual Dexterity #3, the Hallowe'en/Autumn issue I did a couple years ago. I managed to scare up a few copies (see what I did there?) so they are also available. I have limited copies, so if you want one, I suggest you act fast!

                  

I also really excited that my new advocacy business cards from MOO have arrived! For some time now I have been wanting to make some specific to the work I do as an advocate for NMO and MS. I finally got around to it. I've ordered business cards from Moo for years and have had nothing but exceptional service. Seriously, they exceed my expectations each and every time. I decided to order the rounded corners on my cards and to go with the standard business size this time, instead of the mini cards which I love so much. (And can't stop ordering!) They were in my mailbox this morning and they are GORGEOUS! I am going to be so proud to hand them out!

If you'd like to order some for your very own, you can do so here. By clicking the link, you will receive 10% off your first order. Can't beat that!

So..that's the latest news. I am looking forward to Autumn which will be here soon-I'm counting the days!

Sideways

So...it's been awhile since I posted. It's really a case of "Life is what happens when you're busy making plans." I had a NMO relapse and had to have a round of IV steroids in early June and then two weeks ago today, my husband suffered a major heart attack at work. Our lives have gone sideways, so we are kind of in a state of shock still and trying to recover from the scare. Fortunately he had immediate surgery and is recovering, though his heart rate is still wonky. I am trying to deal with what's immediately in front of me, in an attempt to try and keep my stress manageable.

I had just done this revamp of my blog header and template the day before all hell broke loose and then didn't get a chance to actually post. Since I had a sliver of time today, I thought I would do a quick update. Without further ado...

Teresa posted this really interesting book on her Instagram and I was so intrigued I had to run off to the book store to find it. It's really good and reminds me of a zine in so many ways. Fun stuff! I'd love to see more books done in this style. The aesthetics of it is so appealing and it feels like you are almost peeking into someone's mixed media journal in a way. If I was going to write a book, I'd like to do it this way. Someday...

Speaking of zines, I wrapped up the zine exchange I was hosting. I now have a beautiful box of inspiration. So much good stuff!

This was my contribution, the 4th edition of Manual Dexterity. My plan was to have a few copies available in my Etsy store, but with all the health stuff that came out of nowhere, I just haven't had the time. I will have copies for sale eventually and I'll post here to let anyone who is interested know. I just can't say exactly when that will happen right now.

I've been puttering in my 101 year old journal. Some days it's nice to sit down for half an hour and make something. I have just been flipping to a random page and going for it. Slowly but surely, the pages are filling up. I am so in love with this journal.

I have been enjoying exploring my new neighbourhood with Indy. This is part of the green belt one minute outside my door. I feel so lucky to just be able to pop into the woods any time I feel like it. We live in an area that, according to my best friend has a very high incidence of bear sightings, but so far, no luck. I am not afraid of bears-I took a bear aware course years ago, but I do have respect for them. I am always mindful that our paths could cross any time I am out and about and I will be prepared to act accordingly. I don't want any bears to come to any harm because of me.

On Father's Day, we went up to Whistler for the day because we felt the need to see things like this.

And swim in Lost Lake.

 And eat amazing food like this (The BEST fish taco)

And this from La Cantina, our favourite restaurant in the village. My son had never been before and is a foodie so it was fun watching him taste a bunch of different menu items.

My friend Amy very sweetly sent me this book when I was having trouble sourcing it locally. It just arrived this week, so as soon as the weather cools down a bit, I am going to dive into painting. Can't wait. It's so hot at the moment that I don't think my paints would stay open long enough for me to get them onto the canvas. By the way, the author, Tracy Verdugo is turning 50 and so she's giving away 22 spots in her upcoming online class. The details are here. I've been entering daily because I'd LOVE to have the opportunity to expand my painting knowledge. Paint for me is joy and I'm on a mission to invite more joy into my life. I have my *fingers crossed*!

Maureen made this gorgeous paracord bracelet and sent it to me. That was a good mail day-perfectly timed to lift my spirits. I love how chunky it is and how comfortably it wears. It has a really great magnetic clasp so I can manage to put it on and off myself. (This has become a big issue with my jewelery-with my hands so numb, working closures has become a major problem.) I really love this piece and have been wearing it pretty much non-stop. Maureen is a local BC artist-you should check her out!

I have also been super busy with advocacy work. It seems I just get one project done and another pops up. I have shared a big announcement on NMODiaries this week. I have a guest post up for the MS Society of Canada and I'm working on something else that I can't talk about right now. It's so great to be able to have opportunities to contribute and make a difference. I really do love advocacy work. It's the work of my heart.

So..as you can see, life has been rolling along, despite the major bumps and potholes. We are coping. I am going to try and post more regularly over the summer. 

Art & Advocacy

I wanted to share with you that last week I received the Canadian MS Society's Spring/Summer magazine in the mail. As I was flipping through it, I came across me! Back in February, they invited me, as someone living with NMO to join their Flee or Fight national campaign. I was honoured to be a part of it and submitted this photo. I knew it was going to be used-I just didn't know where, when or how. It's really exciting that it was included in the magazine which was sent out to homes across Canada! What a great way to raise awareness!

I also finally was able to gt my hands on a copy of Dawn DeVries Sokol's new book. It's a chunky monkey, loaded with beautiful art journal pages. If you don't own this one, it really is a must have.

I am please to share that my artwork is on page 33.  Both of these pieces of work mean so much to me-the man on the left was my Gramps' maternal grandfather (my great, great grandfather) old man Reimer and the family in the photo on the left is my Gram's family-my great grandparents (I was named (my middle name) for my Great Grandpa Nowell, who died a month before I was born) and my Grams' siblings. (M great aunts and uncles.) My Gram is the tall one at the back. It's a really lovely way to remember them. My friends Seth Apter and Penelope Harris also have work in this book.

I am currently working on finishing up my latest zine and watching my post box for all the zines being submitted to the exchange I am hosting. So far three have arrived and they are amazing. I am looking forward to packaging them all up and sending them off to everyone. I know they are going to love them! I have included the art work that's in Dawn's book in my zine. I couldn't resist!

I also participated in the MS Society BC-Yukon Division's art show. These are the pieces I submitted. It was a great way to help raise awareness for NMO. At one point, as I was taking this photo, two women walked up and one pointed out to the other, the long lesion on my spinal cord shown in the middle piece. (Which, by the way was published in Seth Apter's The Pulse Of Mixed Media.) I leaned over and said "Yeah and that's an NMO lesion, not and MS lesion." They then introduced themselves as scientific researchers at UBC. They were quite excited to see an MRI image used in this way.

It's been a busy time settling into our new home and neighbourhood. I've been busy feathering our new nest. The days just seem to fly by.

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!

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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!

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!

Nominated!

I keep forgetting to post about being nominated for a Health Activist Hero award. I was nominated by Lisa of Damsel in a Dress fame. (Thank you Lisa! I am humbled.)

If you would like to endorse (vote for) me, I would love that-if I win, Wego Health will make a donation to the charity of my choice. Voting is open till the end of December. Just so you know, you can only vote once, so it's pretty quick and painless. To vote for me, click here. 

A heartfelt thank you to the 48 people who have voted for me so far. You guys ROCK!!

Additionally, the blog team of Someonelikeme.ca, the Canadian MS Society's blog for younger people who either have have Ms or have a loved one affected by MS has also been nominated for a Best Team Award. I've been writing for Someonelikeme.ca since the website's inception almost 4 years ago. If you'd like to take a moment to endorse our team, I'd really appreciate that too. 

You can vote here.

Please feel free to share this post with your networks-the more votes we get, the better the chance that we'll win and the MS Society of Canada and the Guthy-Jackson Foundation will receive donations!