Friday, June 22, 2018

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:


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.


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.


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.""


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!

Sunday, May 13, 2018

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!

Saturday, April 28, 2018



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!


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. 


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.


Alight -Mike Yung
Keep You Dry -Juke Ross
Crazy Love -Juke Ross
Call It Dreaming -Iron & Wine


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!

Wednesday, April 11, 2018

Well Hello 2018! 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!

Sunday, December 31, 2017

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.

Monday, September 11, 2017

Keeping My Promise

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

Wednesday, August 16, 2017

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