The Worst Day Of My Life

It’s with an absolutely broken heart that I’m posting to let you know the love of my life died early this morning in his sleep of a massive heart attack. It’s an enormous shock, as he had just gotten a clean bill of health from his doctors a month ago and was laughing and smiling last night when our son dropped by to pick something up and again before he said goodnight to me.

Because of the situation of the pandemic, were unable to have any kind of gathering right now, but when we can, we will.

Do me a favour & hug your loved ones tight, as soon as you can. We think we have the luxury of time & the truth is, we don’t.

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.

Things I am Digging Right Now

This gorgeous custom made ring my husband gave me for Xmas. It’s the work of the very talented Lana of Lana Betty. I fell in love with the stone which is a rutile quartz. Lots of drama! I love the rain drop cut-it’s so very west coast. 

Dogs with Wings, an organisation out of Alberta that trains future service dogs is being supported by Naked Ape from January-March. For every bracelet sold from their special collection during this campaign, they will be donating a percentage to Dogs With Wings. I ordered this Amazonite mala and they are going to add their dog charm to it for me. It reminds me of Indy. Always happy to support service dogs! 

 

I happened to spot these adorable boots on Instagram. When I followed the link to the online store, Shoes For the Soul, I discovered that the brick and mortar store was located in Nelson, BC, an area I am quite familiar with. I decided on the spot to order myself a pair. These are so, so comfy-they’re European made and are a boot that wears like a shoe. I am wearing the h*ck out of them. My feet are so cozy. My experience with European made shoes is that the quality is excellent, so the shoes last forever. I live in El Naturalista clogs from Spain most of the year and these will be my go-to footwear in the colder, rainy seasons. 

 

I also came across these fun leggings from Leg Art and had to order myself a pair. I’ve never owned leggings before and I mainly wanted these for wearing at home. They arrived in record time and are super soft. We’ve had some warmer weather lately, so I haven’t had a chance to try them out yet, but soon!  I just ordered a grey tunic from them last night as well. It's already on its way!

I downloaded this app called One Second Everyday. I wanted to do a daily art practice of some sort but didn’t want it to become a chore. I am liking this so far because all I have to do is shoot a super short video (usually no more than 10 seconds) and then load it into the app and clip it down to 1 second. It takes hardly any time at all. The other option is to use a photo. I’ve been using a combination of videos and photos and so far have 2 weeks worth collected. At the end of the year, I will have a 365 second video of my entire year.

The app allows you to see the video you’ve compiled as you go too, which is fun. It’s a lovely way to document daily life and all the little things you might otherwise forget. The app has a paid version, but I’ve been using the free version so far. I may buy a year membership which is $35 and allows for longer clips and music, etc. I’m still thinking about it.

I saw some lovely art supplies online and called my local source to pre-order them. I have some Xmas money still and figured this would be a really nice treat. Above is a book full of art papers that looked delicious. I liked it so much I've ordered two copies.

Some stencils and masks to play with on my gellie plate. Cannot wait for these!

And some washi tapes. I haven't bought any new ones in over a year (I own about 140+ different rolls!) but these called to me, so I figured why not?

When I was out at a medical appointment the other day, I popped into Micheal's to see what was new and came away with this little packet of Jane Davenport washi tape. They are marketing it as washi tape, which is weird because as you can see, it's not on a roll like tape nor is it actually tape-it's printed sticker sheets. They are 3 inches long and the height of each one varies. There are 5 different sheets in the packet. Still, they were interesting and pretty, so I got them to use in my journal. 

And in my eternal quest to find a white pen that can write over mixed media, I finally found a Sharpie white paint pen. I really wanted a finer tip, but I'll test drive this one and if it does what I want it to do, then I will track down a smaller tip version. I can't tell you how many pens I have purchased over the years, only to have it be a huge disappointment. Gel pens, sigma pens, etc. I am hopeful this one will be what I want because it's water based paint. They also had an oil based paint pen in white, but I don't think I want to expose myself to the smell-I don't need the migraine I would get from it. If you have a white pen that writes really well over mixed media pages, please tell me about it. I would appreciate the info!

And just in case you're wondering, this post is in no way a sponsored post-it's just things I have purchased and loved and wanted to share with you. I'm not being paid by anyone to say nice things-all opinions are my own. 

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.

Hello Summer!

Hello again! I had planned to post much sooner, but life has a way of upending even the best laid plans. I caught an awful bug and was in bed for several days feeling absolutely terrible. I am over it now I think and hoping that I can avoid catching anything else through the end of the year. I am so sick and tired of being sick and tired! 

As you can see, I have new glasses. The ones I got a year ago were no longer doing the job since I had optic neuritis, so I had to upgrade. I chose red frames, even though I really wanted purple. The general consensus is that these were a good choice, so that's something.

Here's some of what I've been up to:

Creating

Believe it or not, I've been doing a lot of writing in the last little while. I just completed my artist statement and bio for the Universal Declaration of Human Rights Quilt Project which I wrote about here. Tal will be creating zines for each of the four quilts featuring each artist in the quilt using this information. I am really looking forward to reading the inspiration behind each artists' work. As things get uglier in the world, this project and its message seems more timely than ever and I am proud to be a part of it. 

I have also been working on my second article for the Rick Hansen Foundation blog, which will be posted in mid-August. The first one, if you missed it, is here. I am trying to keep ahead of the game because August is going to be a busy month.

Watching

The 5th season of Alone premiered last Thursday. Previous seasons have been in British Columbia (three seasons) and Patagonia. This season is taking place in Mongolia and it's all participants from previous seasons who tapped out for various reasons. I loved the seasons shot in BC-it was highly amusing to hear people railing about the weather. It somehow came as a surprise to all of them that a temperate rain forest actually gets a lot of rain. I guess none of them did any research on the area they were going to be going to. 

My friend Greta and I are rooting for Nicole who has MS. She is amazingly comfortable in the wilds-in her previous season in BC, she was sharing her beach with huge black bears and seemed entirely unfazed. She was respectful of the bears, but wasn't the least bit afraid of them. She also has an impressive knowledge of plants and was able to source from her environment things to help keep herself healthy. We hope she wins this time!

The 6th season of Wentworth premiered this week. It's an Australian series about a women's prison that is dark and delicious. I love it! Previous seasons are on Netflix.

Reading

The Marrow Thieves by Cherie Demaline who is a Metis author. This was recently loaned to me by my friend Sue's husband. He was telling me about it at Sue's birthday party and when I read the cover, it gave me the shivers, so I knew I had to read it. It's been a bit slow going because I am still having eye issues, but I'm enjoying it. Here's the summary:

"In a futuristic world ravaged by global warming, people have lost the ability to dream, and the dreamlessness has led to widespread madness. The only people still able to dream are North America's Indigenous people, and it is their marrow that holds the cure for the rest of the world. But getting the marrow, and dreams, means death for the unwilling donors. Driven to flight, a fifteen-year-old and his companions struggle for survival, attempt to reunite with loved ones and take refuge from the "recruiters" who seek them out to bring them to the marrow-stealing "factories.""

Anticipating

I have been waiting (im)patiently to hear back from a medical conference I've applied for a scholarship to attend as a patient partner. I should be getting news one way or the other next week. I am pretty sure com-petition is fierce, but if you don't apply, you'll never get a yes. I also applied for a scholarship for another one taking place in October but I won't hear back on that one till mid-August. I am *the worst* at waiting. It drives me batty.

Other than that, we've been enjoying dinners out on the patio almost every night. It's a nice way to reconnect at the end of the day and enjoy the peace and quiet. I've also been taking my laptop out there and writing while enjoying the fresh air. It's nice to finally have the space to be able to do that. Once I get my article completed, I can think about what projects I want to tackle over the summer. I need to make a list!

Mission Accomplished!

Success! I have finally gotten around to getting patio furniture! I love this set-the table is gateleg so it folds down when not in use (great for winter storage!) and can be half extended or fully extended, depending on how much surface space I need. The chairs are super comfy and can recline if you just want to hang out and relax. They also fold flat. My son very sweetly put everything together for me. I could have done it myself but it would have taken my longer with numb hands. I was just as happy to have him do it.

I didn't end up buying an outdoor rug-I decided against it since during the summer, I give Indy beef bones and frozen treats to eat outside. It's easier to just rinse off the decking and not have to worry about food getting all over the rug. I'm all about low maintenance. It's also cooler for him to lie on the decking vs. a rug. This is his space too and I want him to be able to enjoy it.

I am very much looking forward to rolling my Ikea Raskog cart which houses all my art supplies (acrylic paints, watercolours, water soluble pastels, paintbrushes, stencils, etc.) out to the patio to work. I think at this point, pretty much every artist I know owns at least as one of these carts. I'm going to pick up a vinyl table cloth at the dollar store to protect the wood-that way I don't have to worry about making a mess.

So far we've enjoyed several lunches and dinners el fresco. It's been really relaxing to sit outside and enjoy the quiet. My son is cooking tonight for Mother's Day (BBQ!) and we'll have dinner outside. It's a beautiful day here on the west coast of Canada. We started out the day taking Indy up to the lake after breakfast for his first swim of the year. He had a great time and is happily snoozing.

Anyway, I am glad to finally have this "feathering the nest" project done. Now it's on to the next!

Currently

Creating

I have been slowly working on my Pocket Journal. When I have a block of time & some energy (which has been very scarce in the last month) I sit down and put paint to paper. I have been laying down layers and not finishing pages, so much as just getting things built up. Rae Massigman, whose class I took online seems to work and entire page from beginning to end in one go. I don't work like that-I like to come back to the page with fresh eyes a number of times and keep working it. Each to her own, I suppose and there's absolutely nothing wrong with that. I do what the spirits move me to do.

I wandered into Micheal's the other day while I was downtown. I haven't been in one in ages. I discovered that they are carrying a wide variety of journals and all the associated goodies to go with them. What caught my eye was a small Traveller's Notebook style cover. 

I was looking for something like this at the beginning of the year to use as a medical journal. I got the cover and bought some of the notebook inserts that have calendar pages in them. I've been working on filling in the first 4 months worth of medical stuff. No mean feat-I have had 45 medical appointments in the past 4 months (including a 12 day hospital stay) so you can see why I need a medical journal to keep track of all the appointments, tests, treatments and medications. 

What's nice about it is I can change out calendars at the end of the year and keep using the cover. The journal is 4 inches wide x 6 inches tall and is as thick as you make it. Mine's about an inch thick with just two calendar books in it. (For some reason, the calendar insert books only have 4 months in them, so January-April is in the first one and May-August is in the second one. I'm not adding the third till I need to record appointments for the fall.) I think I will look online for an insert that has all 12 months when it comes time to change them out for 2018. 

Also, their version has a single elastic inside to add the inserts into the binding. I went on youtube and found a video on how to hack this so you can add additional inserts. All I needed to do was buy some elastic, which I did. Problem solved! It's highly likely that I will eventually sew my own version of the covers. I like the idea of being able to make exactly what I want and I certainly have all the supplies and tools to do this and to make my own custom inserts as well. This may be my first summer patio studio project!

Reading

Since I had an optic neuritis attack I have been struggling with recurrent headaches and that makes it hard to read. I haven't picked up a book in 7 weeks or so. This is completely out of character for me, bookworm that I am. I miss reading and am hoping that when I see my othamologist in 2 weeks she can help me sort out whether I need new glasses. (I am betting that I do.) Not sure what to do about the residual eye pain I'm experiencing. (But that's a whole other can of worms.)

I see Stephen King has a new novel out, The Outsider so that will be next on my to-read list. 

Watching

Code Black, which I love so much premiered this week. If you haven't watched it, it's *so* worth checking out. The writing is amazing and just like This Is Us, it makes me cry just about every week. Also the characters of Leanne (Marsha Gay Harden) and Jesse, (Luis Guzman) Daddy and Mama, respectively are just so, so good. I have always loved medical dramas and this ranks as one of the all-time best.

Listening

Alight -Mike Yung

Keep You Dry -Juke Ross

Crazy Love -Juke Ross

Call It Dreaming -Iron & Wine

Anticipating

I am currently obsessed with all things patio. As I mentioned in my last post, I am determined to do a complete patio make over so that I can work outside during the day and we can dine el fresco in the evenings. We get the nicest breeze that seems to come up without fail right around dinner time and its just so pleasant to sit out there and enjoy good food and quality time.

I finally decided on what furniture I want to get to make this happen. I want the chairs to have high backs and be super comfortable, but I also want to be able to fold them up over the winter when we're not using them. Same goes for the table-enough seating for up to 2 guests, with the ability to fold down to accommodate just the two of us and to be put away when not in use. I also want wood, not plastic or metal. After looking online for months, IKEA finally got their summer outdoor furniture stock and I found what I was looking for.

I love this chair, which folds flat.

This table can seat 2 with just one side extended or 4 when fully extended and folds down for storage. We'd never do more than 2 dinner guests at a time, since our patio is a reasonable size, but not huge, so this is perfect.

 I like these chair pads. They look comfy and I like the toggles that help attach them to the chair. Better than velcro, IMHO.

I might possibly add an outdoor area rug as well. This one is inexpensive, which is fine by me, since it would quickly be covered in dog fur. (Which is no biggie. I'd just have to shake it out or vacuum it once in awhile.)

Our condo is having all the patios power washed over the next couple of weeks, so once that's done, I can move ahead with my plan. (For the record, I hate power washing. It's noisy, messy and a colossal waste of water.) No point in setting everything up, only to have to bring it all inside while they work. I think they will be starting on our building first, so hopefully by next weekend it will be done. 

This week the weather has been beautiful-clear blue skies and temps between 23-27C. Thursday was a 27C day and too hot for me, but our patio has full shade all day, so it would have been a perfect patio day. Indy spent the whole morning outside napping and I felt bad when I had to call him in so I could go to a medical appointment and the UBC Health Mentors Symposium.

***

On Monday I was in the city volunteering with UBC, helping Physiotherapists who are already in practise learn about assessing patients who have rheumatoid arthritis. They got a bonus lesson on NMO. I really enjoy working with the PT program-the people are always so nice and very appreciative of having the opportunity to learn from real live patients. It's a privilege to have the opportunity to have an direct impact on the future of health care in our province.

Thursday was the annual UBC Health Mentors Symposium. My students shared what they have been learning about in our group with the other Health Mentor groups and with the faculty. Our presentation was largely about continuity in care across two health regions. My medical team is vast and spread out across two health regions, who don't share information. My group mapped my medical team to illustrate the challenge of this, which I think was eye opening for people to see and prompted some great conversations. I am so proud of my students-they are smart, engaging and funny. My time with them is always enjoyable and I am going to miss them as we are on a break now till mid-September. We have two more session in Autumn and then they are done. Time flies!

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!

Farewell 2017!

It's been a tough year in many ways, which is why I let blogging fall by the wayside. I've been struggling with my health (again...still...) and I lost someone very dear to me, which broke my heart. I just felt I didn't have much to say that was useful and maybe that's a good thing. Sometimes it's better to just embrace the quiet. Introspection can be good self-care.

The last hours of 2017 are winding down. I'm off to dinner with my love to celebrate the 28th anniversary of our first date. I am grateful for whatever impulse grabbed me 28 years ago when I was home sick with a bad cold to say yes when he asked if I'd like to go with him to a hockey game which was starting in less than an hour. I took 5 minutes to throw some warm clothes on (I'd answered the door in my PJ's) and drag a brush through my hair and somehow we managed to make it in time. Four months later, we were engaged and six months after that, we were married. Our life together has never been boring and while life has had it's ups and downs, we have been happily rock solid through it all. This seems worthy of celebrating. We're headed to our favourite Chinese place.

I am still waiting for a word to pop into my head for 2018, but I've had a concept floating around in the back of my mind. I just have to figure out how I want to express it. I'll have to chew on it some more. I know I will figure it out.

January is shaping up to be a busy month. I just sat down to get everything on the calendar today and it's clear I'm going to hit the ground running. Tomorrow will be one last day of savouring the holidays though, before I need to dive in. We've planned a quiet day of home relaxing and that suits me just fine.

So..if you are reading this, thanks for popping by. My intention is to resume blogging in 2018. I wish you Bonne Annee! Happy New Year! wherever you are in the world. My hope is that 2018 is a kinder, gentler year for us all. May it be so.

Keeping My Promise

Honouring the memory of Kenneth Charles Ledee, lost in WTC II, September 11, 2001.

The Universal Declaration Of Human Rights Quilt Project

Hello again! I am back. I've taken a good chunk of 2017 off due to illness and most recently the loss of someone very dear to me. Today seemed like a good day to jump back in and share a new project with you.

Back in late May/early June, Tal Fitzpatrick & Stephanie Dunlap put a call out for an international collaborative craftivism project aimed at highlighting the Universal Declaration of Human Rights and bringing awareness to the ways in which it is being violated around the world today.

I knew immediately I wanted to participate in this endeavour. It's not the first time I have taken up needle and thread and created something to share with the world like this. 15 years ago, I participated in the United in Memory Quilt Project to memorialise those lost on 9/11 and it changed my life.

It took me about 3 weeks to complete my block for the UDHR project. I knew it would be challenging stitching with hands I can't feel (imagine stitching with a pair of oven mitts on and you'll have some idea what it's like) but I didn't realise the impact my vision would also have. Let's just say this piece is likely my last stitchery project and given the level of difficulty, a true labour of love.

I chose to work on Article 25. This is how it reads:

(1) Everyone has the right to a standard of living adequate for the health and well-being of themself and of their family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond their control.

(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.

*Note: On my block, part 2 of the article is in French to reflect Canada's two official languages. The text reads as follows: "La maternité et l'enfance ont droit à une aide et à une assistance spéciales. Tous les enfants, qu'ils soient nés dans le mariage ou hors mariage, jouissent de la même protection sociale."

This is the story behind my block, which will help you to understand why I chose Article 25 and the inspiration behind the design.

"Like all Canadians, with the exception of the First Nations People of our country, I am descended from immigrants. My people came to this country I imagine, for a better life for themselves and their children. As I read the words of Article 25, I couldn’t help but think of my great grandfather, Einar Nowell and his life-long struggle with his health, which in turn led to struggling to support his family.

Grandpa Nowell was a baker by trade. He worked for the Pauline Chambers Company, one of Winnipeg’s largest suppliers of baked goods. Unfortunately, over time, he developed a severe allergy to wheat. The more he worked, the sicker he became until he had to stop working. This left him with no means to support his wife and 6 children, save for going on what was then referred to as “relief”, which is now known as public assistance or welfare. After being away from the allergy inducing environment of the bakery for a few months, he would start to recover. Once he was well enough, he would return to work until he became too ill from his allergy to continue and the cycle would start all over again.

My grandmother, who was the eldest child told me stories about how desperately poor her family was. A small can of Libby’s spaghetti was expected to feed her entire family of 8. When she was in school, her lunch consisted of a lard sandwich-which is exactly what it sounds like-two pieces of bread with lard slathered on it. Once I asked her what presents she got for Xmas growing up. The only gift she ever remembers getting was a pencil and a hanky.

Eventually it became impossible for Grandpa Nowell to continue on at the bakery. Around this time, the government was giving farm land to people who were on relief, with the idea that they could work the land and provide for their families. Grandpa Nowell moved the family to Anola, Manitoba, 24 km east of Winnipeg. He worked the farm for years. When my grandmother was 17, she moved to Winnipeg for a job at the grain exchange and sent most of money she earned home to her parents help support the family.

On the morning of Feb 15, 1971, Grandpa Nowell told Granny that he had a feeling that the kids were going to come home that day, so he was going to go plow the drive to clear the snow. About an hour after he’d gone out, Granny looked out the window and saw him leaning over on the tractor. She went to see what was wrong and discovered he’d died of a heart attack. His premonition turned out to be correct; his children did come home that day. He left this world 5 weeks before I came into it, missing the birth of his first great grandchild whom he was so excited to meet. I am named in memory of him.

The artwork on my block is in honour of Great Grandpa Nowell. The photograph is of him and my Great Granny and four of their six children.( My Grandmother, Verna is the tallest one in the middle of the back row.) The button is for my Great Granny, who was a seamstress and the piece of measuring tape is from the 1940’s and belonged to my Grandmother Verna. The scrap of paper underneath the photo reads in part “removes of ill-health”, which I thought was fitting. The house is made from a scrap of cardboard, to represent poverty.

In many countries around the world, there is absolutely NO social safety net and for those that do have one, it’s often woefully inadequate. The simple truth is that poverty kills and no country is immune."

***

There are going to be 4 quilts, each containing all 30 of the Articles. Each block has been designed and created by one of 120+ artists from over 23 countries around the globe who have a story to tell. This is mine.

It's been very comforting, especially given the current political climate to know that there are so many artists who care about what's happening in the world and are doing what they do best to help raise awareness and bring healing. I am especially touched by my fellow artists who live with chronic illness and disability who are participating. There is strength in numbers and I feel the love and solidarity in everyone's work. I know the completed quilts will be incredible.

To learn more about the UDHR Quilt Project, please visit Tal Fitzpartick's website here. You can see many of the blocks in progress and also those that have been completed on Instagram by searching #UDHRquiltproject & #UDHRquilt 

In Memory

One of the finest men I have ever known is being laid to rest today.

The world will be less without him.

Carlos Daniel Ledee

August 11, 1934-June 12, 2017

You do not go alone; a piece of my heart goes with you.

Simplifying 2017

So in my last post, I mentioned that I'd chosen the word simplify as my word for 2017. I thought I would share a bit about why.

Almost 2 years ago, we moved, downsizing from a three bedroom house to a one bedroom condo. We cut our living space by about two thirds. Before we moved, I went through each room and purged things we no longer needed-some was sold off at a garage sale, a ton was donated to charity, some was re-homed with our son and then there was a small bit that was actual garbage. The idea was to not move anything that we didn't need or want.

Even though I eliminated a ton of stuff, once we moved, there was still a considerable amount of things that ended up in our small in-suite storage room (which is essentially just a small narrow closet with a few shelves) and in the two double closets in our bedroom and the front hall. After a year, I decided to go through the boxes in the storage room because I hadn't opened a single one the entire year and I was beginning to question if we did in fact need anything in those boxes badly enough to keep storing them. In that purge, I managed to eliminate 6 additional boxes of random stuff.

So here I am, two years later and still feeling like I could free myself of more stuff. And let me tell you, it really is freedom. I have less stuff to dust and take care of. My home is neater and more organised. I spend less time looking for the things I need because almost everything is where it needs to be. That said, there are still boxes in all the closets, most of which I think I can now let go of.

It's been an interesting process. I am certainly far more mindful of bringing anything new into my home and when I do, I make sure that if it's replacing something, that I remove the old item immediately. I don't have a ton of nick knacks now either-I hated dusting them all when we lived in the house but I didn't have a choice because I have allergies. That's not to say I don't have a few, but I am far more selective about it. This has allowed space to display actual art that either I've created or have been given to me by artist friends, which I love.

Another thing that I worked on over the fall was creating a capsule wardrobe. Essentially it's a small collection of clothes that mix and match and serve your life better. I always hated opening my closet and having to sift through clothes I didn't like for whatever reason, clothes that needed repair or that didn't go with anything else. It took me awhile, but my capsule wardrobe is almost complete for the colder seasons. I will have some work to do in the summer, but it should be minimal. I might sound a bit of an odd exercise, but doing this has gotten rid of the daily stress of thinking I don't have anything to wear. I can reach in and pull out an outfit immediately, without having to give it much thought. I'm a busy person, so this is a win in my book. 

My capsule wardrobe isn't expensive or fancy-I built it around what works for my life. Here's a quick run down:

-Jeans (blue, black)

-Dress pants (black)

-yoga pants

-capris (black, grey)

-T-shirts (in a variety of colours, mostly v-neck, short, 3/4 & long sleeved)

-Tank tops (for summer)

-Dress shirts (a couple for wearing over t-shirts & tank tops)

-Cardigans (one dressy, one casual)

-Runners (2 pair, in 2 colours)

-Clogs

-hiking shoes

-rain boots

-winter boots

-winter coat

-rain coat

-polar fleece jacket

-hoodie

-Scarves (The accessorising kind!)

That's it! As I said, I will have to add a few things in the summer, but not much. I don't have dresses or high heels because I would never wear them. At some point, I do want to add a blazer, but I haven't found one I like yet. If you're interested in the idea of a capsule wardrobe, do a search on Pinterest-there are tons of articles about them. I recommend thinking about what your day to day life really looks like and choosing pieces based on what you know you'll wear. Go through your closet before you shop and get rid of clothes that are worn out, stained, badly out of style, (like say a neon crop top-if you have that hiding in your closet, BURN IT!! The 80's are gone and no one ever looked good in that anyway!) and things that just don't fit and don't make you feel good when you wear them. Once you've done that, you will be able to see where the holes are in your wardrobe and can shop accordingly. It's helpful to make a list of what you have and what you need.

I am also working on purging my studio. I did a big purge last spring, but I still feel like I need to weed out a bit more. My biggest weakness is ephemera. I confess I am a paper hoarder. I have several small boxes of ephemera and while those boxes are small, do I really need several? I want to make a concerted effort to use up some of the contents of those boxes in the near future and then limit myself to a single large box. If I'm going to do that, then I will need to make a bunch of journals! I'd better get my sewing machine set up!

Recently, I downloaded an app called "Any List" to my phone and I love it! I am a list maker from way back and it's helping me keep track of my grocery list, but you can use it to make (and share!) lists for just about anything. It remembers the grocery items I've entered before, so once a list is populated, you can call it up and just cross of anything you don't need each week. As I am shopping, I can tap on each item I put in my cart and it disappears from my list. Super helpful!

So there are just a few ways I am simplifying my life in 2017. I've been looking at the things that are challenging or stressful and figuring out how I can make them less so. Like anything, it's a work in progress, but for me, minimalism is really my way of practising self-care. 

Did you choose a word for 2017? I'd love to hear all about it!

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.