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!