5th Annual UBC NMO Patient Day



We would like to invite you to join us for this FREE event open to patients, family members, friends, caregivers, student/trainees or anyone interested in learning more about NMO.

Date: Saturday, November 26th, 2016.

Time: 10:00 AM – 3:00 PM PST.

Location: the Djavad Mowafaghian Centre for Brain Health located at 2215 Wesbrook Mall, adjacent to UBC Hospital along Wesbrook Mall on the UBC Point Grey campus.

Lunch will be provided (gluten-free and non-gluten-free options). Please register attendance and lunch preference here.

Learning Outcomes of NMO Day:

  • Today’s NMO overview: Introduction to NMO, Diagnosis and Symptoms, Treatment Options
  • New NMO research: What is being done worldwide and here in BC
  • How can you get involved
  • UBC NMO Clinic/Research Program: Update and vision for the future


Oct 2016
POSTED BY Lelainia Lloyd

Thanksgiving Weekend

Totem detail (MOA)

Totem detail (MOA)

Happy autumn everyone! Here in Canada, we’re on the last day of our Thanksgiving weekend. Mine started out Friday morning with an early morning field trip to the University of British Columbia’s Museum of Anthropology (MOA). Visiting this particular museum has been on my life list for ages and I finally had the opportunity to see it thanks to an amazing local group I belong to called Creative Mornings Vancouver. This month, they arranged for members to attend one of two tours before the museum opened for the day. One was about the tools the MOA uses to preserve and treat the pieces in their collection and the other was learning about the stories behind some of the pieces that were created to provoke social change. The day began with a lovely breakfast of pastries and tea and coffee and after the guided tours, we were able to enjoy the rest of the museum at our leisure.

Totem in the great hall. (MOA)

Totem in the great hall. (MOA)

MOA is home to an impressive collection of Canada’s First Nations’ art, but also exhibits indigenous art from other parts of the world. The size and diversity of what’s on display is almost too much to take in in a single visit. My favourite part of the museum is the great hall. The totems and other large scale pieces housed there are incredible. The outer wall of the hall is floor to ceiling glass, giving the illusion of being outdoors. The natural light in the hall really shows off the beauty of the wood and the colours used in the totems. It’s been 3 days since I was there and I am STILL absorbing everything I saw. As an artist, it was incredibly inspiring.

Haida Bear by Bill Reid (MOA)

Haida Bear by Bill Reid (MOA)

Sunday, we had friends and family over for turkey dinner. I always do our Thanksgiving on the Sunday so Monday we can coast on leftovers and relax before everyone has to go back to work. I was a bit apprehensive about hosting the dinner this year because I have really been struggling with my heath and especially with pain from RA. I don’t know what I was worried about though-every time I asked someone for help with something, they were great about jumping in. My son set the table, my best friend carved the bird, my husband and son took care of all the dishes afterwards (we don’t have a dishwasher) and somehow managed to get all the leftovers to fit in our fridge. (It’s like Tetris in there, but hey, whatever works!)

Today, I am relaxing and feeling grateful for such a great weekend. It’s good to be reminded that there is beauty in the world and to be surrounded by the people I adore.

Happy Thanksgiving to my fellow Canadians! I hope your weekend was full of good memories, great food and time with those you love.

Oct 2016
POSTED BY Lelainia Lloyd

Everyday life, Family, Food


Recap of my recent trip to Canada

Christine Ha and Carl Heinrich, hosts of Four Senses on AMI

Processed with VSCOWith my co-host, Carl Heinrich, owner of Richmond Station in Toronto and season 2 winner of Top Chef Canada

I was in Canada the second half of September filming the fourth season of my accessible cooking show, Four Senses. TV is much less glamorous than one would think: I get picked up around 6:45 AM every morning. We film two episodes a day, which has me on my feet for most of it, while trying to be energetic, making conversation with our guests, cooking, and then throwing scripted lines to camera. Because I’m vision impaired, I have to memorize my throws and try to find the camera with my eyes at the same time. This was what I did for seven days straight, as we filmed our entire 13-episode season in 7 days. Then after we wrap each day, I have a meeting with our director, producer, and my co-host to go over the next day’s scripts. Then I grab a quick bite and then study the next day’s scripts and guest bios until I finally get to bed around 11 or midnight. Then I wake up before sunrise and do it all over again.

All that said, being part of the industry has given me a new appreciation for the efforts that go into making a TV show. production is definitely labor intensive, and it takes a strong, hardworking team with everyone doing their job to pull it off. A production is only as strong as its weakest link. This season, our team consisted of 23 cast and crew.

What I like about television is the challenges it’s posed. TV really forced me out of my comfort zone—I’m an introvert and not naturally great on camera—and it’s gratifying to work hard together and know we’re doing something that helps others. In our case, it’s making educational entertainment that challenges those who are vision impaired to regain independence by returning to the kitchen.

I had a few days off in between my field shoots and studio run, so I got to see Jenna, her husband Mike, and their daughter Sophie. It was a rainy day, but we managed to grab lunch and some drinks at Mill St. Brewing before I attempted to hit hockey pucks in the downpour. (It was the hockey World Cup, and Toronto’s Distillery District had been transformed into a cocky village complete with carnival stations..)

The rest of our afternoon was spent traversing the mall downtown. My hubs, John, bought a Blue Jays hat, and Jenna and I combed Aritzia while our men discussed with disbelief about how long women can take in a single store.

As always, Jenna and I talked about the goings-on in our lives, how we’re doing with the Neuromyelitis Optica/NMO, and then made sarcastic remarks about everything else. It’s nice to hang out with people who get our illness but whom don’t make it the center of conversation. We may have NMO, but NMO doesn’t always need to have us.

Overall, I had a good experience in Canada (with the exception of some piss-pour service from Air Canada, but I’ll save that for another time). I’ll end this recap with a few notable observations which, I hope, you’ll find amusing more than anything.

What I learned about Canada, Canadians, and Toronto in 2016

  1. Bears are a common sighting during the fall season. Apparently they’re searching for food to fatten themselves up before winter hibernation.
  2. People who live in Toronto are called Torontonians. Despite what I, a Houstonian, might have thought, Torontonians do not eat poutin every day. In fact, they only ingest it late at night after many drinks.
  3. Torontonians really love their Blue Jays. Unfortunately, I was told Toronto now holds the record for North American city with the longest streak without any sports championships. (The former record holder was Cleveland, but the Cavaliers had changed that.)
  4. Three Canadian snacks you should try are ketchup chips, all dressed chips, and coffee crisps.
  5. Many Canadians are wary of Texans. (Believe me when I say not all Texans open-carry guns and support Trump.)
  6. Whenever they find out I’m American, almost every Canadian without fail brings up Trump. Please know I’d much rather talk about Netflix shows, dogs, and poutin.
  7. September is a great time to be in Toronto because the weather is amazing. Get your breezy, sunny days now before the harsh winter sets in.
  8. Toronto has great food. You can get fine dining, French, Caribbean, Japanese, Chinese, Spanish, and American all within a few city blocks.

Till next time, Canada…xoxo!

P.S. Here’s an interview I did with CBC Toronto’s Dwight Drummond about Four Senses.

Four Senses season 4 cast and crew

It takes a village to make a TV show.

City Exploring: Los Angeles and San Francisco

I find peace in my life by being present in every moment and working towards a better mindful meditation practice. That’s how I thoroughly enjoyed my summer vacation.

This year my family and I travelled to Los Angeles with a stop over in San Francisco before returning home to Toronto. Not one to want to waste a moment (and to constantly entertain a 4 year old) I jam packed our schedule in an attempt to see as much as possible.

We started with 2 nights in Anaheim at Disneyland. A smaller property than Disney World in Florida, there a lot of the same rides. My body fatigue has really affected me lately but with good planning (so you’re not running from one side of the park to the other), and a nap midday, it’s possible to see the best parts including the night time parade and fireworks.


We headed into Los Angeles and visited their farmers market, The Grove, and the pedestrian shopping district. I thought it might also be fun to rent a powerboat and cruise the coastline. After an hour of choppy water (yup, we were sea sick) we opted to stay inland and enjoy some marina cruising. We visited the beaches including Venice Beach with their famous Muscle Beach attraction. I admittedly felt unsafe there because as a tourist trap every street performer, vendor and homeless person wanted our money, and asked in an aggressive manner. And we took in the natural phenomenon of the La Brea Tar Pits, which is as it sounds; natural tar that has risen to the surface and trapped fossils dating back hundreds of years.


We finished our trip in LA at the Santa Monica Pier. On a bright, sunny day we peacefully strolled through the park, just enjoying each other’s company and being grateful for moments like those. I will say that the pier is not a smooth walk. With our small travel stroller, Sophie complained the ride was bumpy and the wheels occasionally got stuck in a ridge or groove. I might not recommend the entire pier to those in a wheelchair. You can still enjoy the view from the adjacent park.


I booked San Francisco thinking I’d love to explore the city but hadn’t done my homework to know it’s quite an expensive city. Accommodations, even modest ones, can run several hundred per night. Don’t think about renting a car and parking; Even with Uber from one destination to another it is much cheaper. San Francisco has their famous Fisherman’s Wharf. A real fan of seafood and meats (protein is your friend when on a Paleo diet) I ate the largest crab in my life, cooked before me on the pier. We also spent a day visiting the Alcatraz Prison Island. I hate audio tours but this was fantastic. Wheelchair accessible with elevators on the island and the ferries, it is a sight for all to enjoy. There is a bit of walking but take breaks because you can leave on any ferry when you’re ready. Be warned about the city in general though – it’s much colder then you’d imagine and the streets are so steep cars ride their brakes often.


I’ve always thought of myself as a beach bum or an adventure seeker but never as a city explorer until this trip. If you decide the west coast is somewhere you might want to visit, both cities and their people have so much to offer.


Just Between Friends or JBF

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For the last three years I found a great franchise that I participate in to buy and sell my kids clothing, toys shoes and etc. It is called Just between Friends they have sales across the United States. The first year I was just a buyer and I couldn’t believe the prices on everything! Things are 50-80% from regular prices. All the items are gently used or some times brand new with tags on. I said to myself after my kids move past the 12 months size in clothing I will consign to the sale. So twice a year I sale to JBF it takes me about a week to get ready for the sale and now that I have been doing this for 3+ years I have came up with a system and figured out what it takes and how to price my items so they sale well. Once I hang up all the outfits on the hangers and secure them on the hanger so they do not fall off. I jump on the computer and login to the JBF system and enter in all my tags then I print them off and start tagging all the clothes and whatever kid’s items I need to sale. Once all my items are tagged I load all the items into the car, which is the night before I have to drop them off.


The next day I have someone watch the kids while I go drop off the items at the JBF sale. It roughly takes me an hour to put all the items on the sales floor. Since I sell items at the sale I get a free pass for myself and a guest to go shopping before the sale opens for the public. My mom comes with me to help shop and it can take us 3-4 hours shopping at this massive sale for two kids. It all depends how much stuff I need to buy and how much clothes we have to look through and shoes. I found some awesome deals on toys as well. I cannot say enough good things about going to these JBF sales it has saved me a lot of money for clothes, shoes and toys. I usually make enough money selling my items that it covers half of what I spend at the sale. Keep in mind I have not started selling my daughters clothes yet she is still in 12 month clothing. I encourage you all to spread the word about this great organization. Below is the website to see if there is a sale near you!





Sep 2016



Making the Switch



Last month, I started on Rituxan. My first infusion was going to be run over four hours, but ended up taking four and a half hours. I was fine for the first hour and a half and then my throat started to feel really raw, I began to cough and eventually I was sneezing so I asked the nurse if this was a reaction to the infusion. Turns out it was. At first, she tried to talk me into toughing it out. I am really drug sensitive so didn’t think this was a good idea, especially when she said she would be turning the flow rate of the IV up. I insisted she give me some Benedryl and steroids to stop the reaction. She turned the IV off for about half an hour to give the medications time to work and once I felt better, turned it back on. I was fine for the remainder of the infusion. The first day after the infusion, I felt okay. By the second day, fatigue hit and I spent the next two days napping off and on. It took me a bit to figure out that this was how my body was dealing with the infusion.

For the second infusion, two weeks later, I was told to take 50 mg of prednisone (steroids) early in the morning, instead of late the night before, with the hope that I would sail through the infusion more smoothly. I woke up at 5 a.m. to take the steroids. Not the best taste first thing in the morning (or any time for that matter) but it seemed to do the trick. This time, I was able to do my infusion in just three hours. My next round will be in late February next year and those infusions should be done in two hours.

It’s been interesting switching to a biologic. I am taking it to treat another autoimmune disease I was diagnosed with recently-the fact that it also works for NMO is just a bonus. For the first time in nine years, I am not constantly taking a handful of pills or giving myself a daily injection. I am also no longer taking prednisone, aside from the 50 mg pulse I do right before the infusions. It’s really hard to wrap my head around this. Weirdly, I feel like I should be doing more. I am really hoping that this biologic works for both diseases and I can finally feel better. As I mentioned in my previous post, it’s been a really rough summer-I have been the sickest I’ve ever been and it’s been pretty scary.

So far, I have the fatigue for a few days after the infusions. I’ve lost my appetite-I am only picking at meals. I am still in a considerable amount of pain which right now is my biggest concern. I was told it can take a month or more to see the benefits of the Rituxan. I am hoping it kicks in soon. Meanwhile, I am working on recovering as best I can and trying to get on with my life. We are transitioning to autumn weather here on the west coast of Canada, so the cooler temps are lifting my spirits. (Autumn is my most favourite time of year.)

I hope things are good in your neck of the woods!

Sep 2016
POSTED BY Lelainia Lloyd

My cooking show, Four Senses, is returning for a fourth season

Christine & Carl Four Senses 2 (Varner Productions Limited)

My co-host, Top Chef season 2 winner Carl Heinrich, and me in front of our Le Creuset adorned set

Next week, I’ll fly to Toronto, Canada, to begin production of season 4 of Four Senses, a cooking show geared towards the vision impaired and novice cook. The show airs on Accessible Media, Inc or AMI, but even if you aren’t Canadian and don’t get this channel, you can catch the show on AMI’s website, complete with a fully accessible media player.

If you asked me a couple of years ago if I’d ever thought I’d have a cooking show going for four seasons, I would’ve shrugged and said, “Who knows?” If you would’ve asked me five years ago if I thought I’d ever be on TV, I would’ve laughed in your face. It goes to show you just never know with life—both good and bad things happen to us during the course of our lifetimes, and all we can do is make the most of them.

Every season has gotten better and better, and I attribute it to more support; growing funding; and, perhaps most of all, a stronger and more experienced team of cast and crew. I think you’ll be able to tell the difference in caliber if you watch our first season versus our third and most recent.

I’m looking forward to yet another season. People often don’t realize how much hard work goes into producing a television series—one 30-minute episode takes at least four hours of filming (and that’s not including the out-of-studio field pieces we shoot on a different day, plus the hours of post-production editing). Being in the entertainment industry is not as glamorous as one may think, but I love what I do—it’s the best feeling to wrap a shoot and know that all the hard work everyone put in together will result in something great. It’s an exemplary example of how teamwork is essential to success.

I won’t get too much time off—we shoot our in-studio portions of the season seven days straight (which is how most television production schedules go)—but when I do have a little downtime, I’ll be vlogging and visiting with Jenna.

Canada, here I come!

Sep 2016
POSTED BY Christine

Medicinal Marijuana for NMO

Throughout my NMO journey I’ve tried to keep an open mind towards alternative medicines. I’ve had great success with naturopathic care, acupuncture and osteopathy so when many of my trusted friends suggested cannabis, or medicinal marijuana, I thought it worthwhile to look into it. Cannabis has a bad reputation; Many people think marijuana is for a bunch of hippies getting high and eating Cheetos. Others think getting a marijuana prescription is just for those making up mild conditions who want to get high. Whilst both might be true in our world there are some fantastic testimonials from real patients.

I’m not the type to role a joint and get high but throughout my research I discovered CBD oil, or Cannabidiol, which can be consumed with a few drops on food, in drinks or straight under the tongue.  You can even diffuse CBD oil but others in the room will also feel the effects. There are many strains that have low or no THC levels, which is the component that gives the feeling of being high. I was transparent with my family doctor that medicinal marijuana was something I was considering. He was honest that he didn’t have extensive experience nor could he prescribe it but he did refer me to a reputable clinic that did.


I’m fortunate that a close friend happens to be a key sales rep for one of the major distributors of medicinal marijuana products in North America. He spent a lot of time understanding my symptoms and suggesting the best CBD oil products. Here are my take-aways of CBD oil:

  • It still stinks. If you dislike the skunky smell of marijuana you still won’t like the oil.
  • Marijuana strains are very different and have names like Indica, Sativa or Hybrid. ie. Some help with insomnia, pain management, fatigue and/or several different combinations.
  • Each production changes so although manufacturers try to keep the potency levels as close to the last run it’s never exact. Remember, marijuana is a plant.
  • Because of production changes, prescriptions suggest amounts but the patient will need to dose up or down for each new bottle.

I tried CBD oil for several days and I’ve made the decision it isn’t for me. I dosed up and then more (and then more) and could never get the same relieve prescription medication provides me. I struggled with the taste (it was not that noticeable but did have an aftertaste) and after a certain amount I did feel somewhat paranoid. The one positive about CBD oil was that it helped with my insomnia but my other needs were not met. I felt frustrated trying to convert the prescribed grams into millilitres and then into how many drops that translated into.

I think there’s a place for medicinal marijuana but we’re still in the infancy stage. Doctors don’t have enough historical data to understand how the drug might best help different diseases. I can certainly see how marijuana might one day be part of the treatment plan for NMO patients and I know many who already do. The marijuana drug industry is regulated (and legal in many countries and states) but it’s tough for governments to monitor it. Uneducated patients may purchase from small retailers instead of one of the larger manufacturers direct and might purchase marijuana that is unsafe (ie. With pesticides or cross contamination). If you do decide that medicinal marijuana is something you want to try spend the time researching and choose a reputable clinic, doctors and distributors.

Update on Erin after 11 days in the hospital doing PLEX

Here is a video update and some pictures of me doing PLEX.


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IMG_5129 IMG_5130 IMG_5131 IMG_5140 IMG_5156 IMG_5166

Aug 2016



In Survival Mode

Things have been quiet at my end for the last 3 months because I’ve been pretty sick. My time has been taken up with medical appointments, tests, referrals and just trying to survive. I’ve spent a lot of time in bed, feeling awful. That’s not my normal-I am usually quite busy and like it that way.

To try and keep myself entertained I’ve been falling back on photography, which I enjoy. I have a DSLR camera, but it’s too heavy to lug around, especially when I’m not feeling well and seeing as my “outings” are simply to walk my dog, my iPhone has been my go-to. Nothing wrong with an iPhone camera-it does just fine, as you can see.



Being home more has meant my best friend Indiana Jones has been keeping me company. He’s a good pal to nap with. I did manage to get up to the lake early one morning before it got too hot and manage to capture this half out of frame shot of him with his water Kong, which I actually really like.


It’s also meant slowing down and noticing the small details around me like the lichen and moss on the bark of a tree in the park near our home and the secret apple tree I found by accident. I am now watching these apples and plan to pick some when they are big enough!


The Olympics are now on, followed by the Paralympics. Anyone who knows me, knows I am a huge fan of the Games. I’ve been watching on my iPad and cheering for Team Canada. Team Canada is made up of 60% women athletes! Our ladies have been having huge success and we’re only on day 3! I am watching women’s footie (soccer) and women’s 7’s rugby obsessively. GO CANADA!!

So that’s pretty much been my summer in a nutshell. I am keeping this short because my vision is blurry and my hands are not typing as well as they usually do. I am waiting for treatment, which I am hoping to have booked some time in the next week or so. I am more than ready to get my life back.


Aug 2016
POSTED BY Lelainia Lloyd