Celebrating the Season


Autumn is here!! I don’t know about you, but this is my absolute favourite season and it’s in full swing on the west coast of Canada. The days have turned crisp and cool, (though still sunny!) and the colours are so vibrant as the leaves have begun to turn. When I go out to UBC for appointments with my neuro, there’s a courtyard where the leaves get raked into knee deep piles. Sometimes I wander through there, just to have the fun of kicking them up.

Thanksgiving is just 2 weeks away for us Northerners. It’s my favourite holiday. Usually on the Saturday of the long weekend, we go out to Fort Langley for the Cranberryfest. They serve an amazing pancake brekki and then we wander the town and check out all the booths. They close the streets down to traffic and all kinds of artisans and small businesses set up shop. I always make sure I buy dahlias from the church ladies for our holiday table. There are a few of them that grow them in their yards and they pick buckets and buckets of them to sell at Cranberryfest. They have dahlias in every size, shape and colour! For $5 you can choose 6 stems. Can’t beat that!

We usually have our dinner on the Sunday and have friends and family over. I do dinner on the Sunday so that Monday can be a true holiday-no cooking, just coasting on leftovers. Our holiday dinner has become what we like to refer to as “The festival of pie” because my best friend’s husband makes a sweet potato pie and I make pumpkin and apple. Everyone likes something different. Those of us who like all the options get to have three kinds of pie! In addition to family and friends, we also tend to have a houseful of dogs that day. My best friends own Indy’s little brother plus another small dog, so they bring them over too. The dogs get Thanksgiving treats as well-I cook the turkey giblets up for them and they get mashed potatoes and veggies. Everyone celebrates!

In what has become a Thanksgiving tradition, I am sharing with you this beautiful piece of writing, I am not a religious person, but this speaks to my values and vision of how I live my life. Some anonymous soul in the 1600′s recorded these thoughts for posterity so that someday we could read them during this, the harvest season.


Harvest Prayer

Please be gentle with yourself & others.

We are all children of chance

And none can say why some fields blossom

While others lay brown beneath the harvest sun.

Take hope that your season will come.

Share the joy of those whose season is at hand.

Care for those around you.

Look past your differences.

Their dreams are no less than yours,

Their choices in life no more easily made.


Give in any way you can,

Give in every way you can,

Give whatever you possess,

Give from your heart.

To give is to love

To withhold is to whither

Care less for the size of your harvest

Than for how it is shared

And your life will have meaning

And your heart will have peace.

This will be the last post I get up before the holiday, so I want to wish my fellow Canadians a very Happy Thanksgiving! I wish you safe travels is you are heading home to be with loved ones.

Sep 2015
POSTED BY Lelainia Lloyd

Everyday life, Family, Food


6 years (or 2190 days, 312 weeks or 72 months if you’re counting)

Today it will be 6 years (or 2190 days, 312 weeks or 72 months if you’re counting) since Neuromyelitis Optica (NMO) tried to take over my life.

I hate this anniversary.

Every year as the anniversary arrives I try to stay positive and envision myself as some sort of super human. I have a lot to be grateful for (or brag about) – I’m a mom to the most energetic 3 year old, I co-own and run a successful company, I’m a wife to a talented journalist, I have best friends and I still do try crazy shit like run a 10km, snowboard and drink my weight in Chardonnay. Most nights I can’t turn my brain off so I lie in bed, completely exhausted, my body always on fire, my limbs feeling like they’re filled with lead, finally acknowledging that every fibre of my being hurts and I mentally high five myself. Ya. I destroyed today. This fucking disease has nothing on me. And then it’s morning and that egotistical voice in my head sounds panicked. What if today’s the day your feet can’t feel the ground again? What if today’s the last day you ever get to see?

This anniversary always feels like one big morning panic attack.

No matter how much I accomplish the rest of the year, I always feel so defeated on anniversary day. You see, NMO can sneak up on any day, even on one of my ‘better’ days. That is what it is to live with an incurable disease.

I wish I was a big enough person to be gracious today; to be proud that I’m surviving NMO one more year or to simply ignore the day. But you see folks, I am merely just a regular human with a learned ability to know how to fake it. Today makes me angry, makes me sad, makes me resentful. Today I’m more like Gollum, where my version wants to binge eat cheesies, eat several Twix candy bars and spend quality time with Netflix. Don’t look at me!


If you’re feeling this is dark, don’t worry. Like during my mornings, the internal self pity and doubt does eventually end. Something always jars me back to reality – an alarm clock, a preschooler, sometimes even my own motivation. On anniversary day I do the same and wait for the inevitable life challenge to win over my self deprecation. NMO hasn’t taken over my life; It is my life and that’s a truth I’m always denying. Between the doctor appointments, the daily drugs and the consistent pain, there’s also all the good in my life. But if it’s all the same to you, today I’m gonna take my day and cover my knuckles in cheesie dust.

TV, Travel, and the Importance of Sleep

I just returned last week from a month-long stay in Vietnam to film MasterChef Vietnam season 3—yes, I’m now officially a full-fledged judge of the MC franchise!—and this week, I leave for Canada to film part of season 3 of Four Senses, my cooking show in Canada.

Yesterday, my cousin, who is also a doctor, called me to ask how my health was faring.

“The family is worried about you getting a flare-up because you seem to be overworked,” she said.

I did come down with the flu while filming in Vietnam, and because production doesn’t stop for anybody unless there’s blood spewing from the eyes, I still had to shoot with fever, cough, and a loss of voice. In spite of this, I have been blessed to remain free of Neuromyelitis Optica/NMO attacks.

How do I do it?

Well, first of all, it’s probably a lot of sheer dumb luck.

Secondly, having lived with NMO for over ten years, I’ve learned to monitor my symptoms quite well. I know my body can no longer handle functioning on no sleep, the way I used to in my twenties from studying (or, more realistically, partying) all night. I’ve learned that as soon as I feel pain in the back of my eye, I need to pause from life, sleep, and take it easy before a bout of optic neuritis sets in. Of course, everyone’s NMO symptoms and flare-ups manifest differently, so I suggest you keep a health journal to log what sorts of things precede your attacks, how they begin, how long they tend to last, which courses of treatment are most effective, and so on.

For me, rest and relaxation are now a top priority, whether in the form of physical sleep or mental respite. This has helped me keep countless NMO exacerbations at bay. Unfortunately, the frequent travel I do for work makes it incredibly difficult to maintain a normal sleeping schedule. On top of that, I am susceptible to poor sleep and sometimes insomnia. While I don’t recommend this for everyone, I do find a little assistance from an over-the-counter sleep aid helps me regulate my sleeping pattern, especially when traveling internationally. I make sure, however, I don’t become dependent on sleep aids—I’ll only take them when I fly overseas or if I hadn’t had good, straight sleep for several nights in a row—and I only take half or a third of a dosage. Make sure to consult with your physician first before adding anything new to your pill intake.

Many people think my life is glamorous, and while it’s pretty awesome to be able to fly to Canada, Vietnam, and Singapore in two months’ time, and to be doing stuff I truly love, keep in mind it’s still work, and it’s hard work at that. Production often has me on my feet, “turning it on” for cameras ten to fifteen hours a day for, in the case of MasterChef Vietnam, 21 days straight. Sure, this can take a toll on anyone’s health, but I prioritize health and happiness above all else, and that’s helped me accomplish much without sacrificing well-being.

Sep 2015
POSTED BY Christine

Erin’s daily schedule

My day with NMO and 2 kids

I get asked quite a few times how do I manage my NMO and two kids. Without a doubt it can be very challenging at times especially taking two kids to doctor appointment.Some times I will get lucky and will have some one watch the kids while I go see doctors. As we all can relate to having NMO we have a bunch of doctors we have to go see and check in with.
Most of the time I show up to the doctors office with both kids and wish for the best. I am lucky all of my doctors really enjoy my kids and will have a nurse come help watch the kiddos while the doctors are talking with me and running tests. My Neurologist office if I come during lunch time the nurses will take my kids and feed them for me back in their break room.
I thought it would be fun to write out how my schedule is with kids.

6:45 Alana wakes me up to feed her
7:00 Start feeding Alana
7:30 Allen is awake and wants his OJ.
7:45 I get to make my cup of coffee and try to eat something for myself
8:00 Allen wants me to cook him eggs and toast
8:30 I am wrangling the kids up into my bedroom so I can take a shower and get ready.
9:30 Packing up the kids to get to a doctors appointment and load them in the car.
10:00 Arrive at a doctors appointment and hope the doctor is not running too late. Feed Alana again
11:00-11:30 I am hopefully done with doctor and checking out and scheduling for my next visit.
12:00 Back home unloading kids and start making lunch for Allen and myself
12:30 Allen and I are eating lunch
1:00 Cleaning up the kitchen and making phone calls to people
1:30 picking up the house and telling Allen its almost time for a nap
2:00 Allen’s nap time, tuck. I hand off the kids to him so I can him into his bed. Also time to feed Alana
2:30 Misc stuff that needs to get done around the house
3:30 I try to come up with some ideas what to cook for dinner and try to keep Alana entertained
4:00 Allen wakes up from his nap and wants a snack
4:30 Eric comes home from work. I hand off the kids to him so I can cook dinner
6:00 We sit down for dinner
6:45 clean up the mess from dinner and time to Feed Alana
7:15 Eric and I play with the kids together as a family
7:45 Allen and Eric take showers.I get Allen in his PJ’s
8:00 I get both kids bedrooms ready for bedtime
8:15 I get Alana ready for bed
8:30 Feed Alana her last bottle for the night
8:45 Get both kids room for bed time. Eric finishes feeding Alana
9:00 Tuck Alana into bed. Read Allen a book and tuck him into bed
9:30-10:30 Make sure both kids are a sleep before I can go to sleep.

That’s my day folks!

Sep 2015



Summer Photo Fun

We hope you had a great summer. We’ve all enjoyed the many adventures that we encountered despite neuromyelitis optica (NMO). Here are our favourite photos of the summer:

From Lelainia

The Lloyds

My husband and I have been empty nesters for about 5 years now, so it’s challenging to come up with a photo with all of us in the same frame, especially when two of us (Carver and I) are avid photographers and prefer to be behind the lense. This group of photos was taken on Father’s Day this year, 4 days before my husband suffered a major heart attack, which makes them all the more special to me. We took a day trip to Whistler, which is our happy place and did some hiking, swimming, shopping & eating. My son spotted a selfie stick and bought it as a gift for me, so hopefully the next time we’re out having adventures together, we’ll all end up in the same frame.                                                                                                                                                                                                                                                                                                                                         From Jenna:

soph  pug  run My happy place is up north in Muskoka country at my husband’s family cottage. In Ontario, Canada, most city dwellers jump at the chance to drive several hours to the great outdoors, every weekend. We’re not as extreme but instead take a couple of weeks off. From Erin: IMG_6288 IMG_6648 IMG_6772 IMG_6826 IMG_7451 IMG_7363 IMG_7282 IMG_7264 IMG_7127 IMG_7057 IMG_6996 IMG_6921   As our summer is coming to an end we sure did have a lot of fun! We did a lot of activities as a family. I really enjoyed watching Allen being at his favorite place, which is the track. Alana is growing up so fast she no longer has the look of a newborn . Eric has been working a lot since this is his busy time of the year. The best part was just doing a lot of things together as a family. From Christine: Processed with VSCOcam with s2 preset masterchef This summer John and I did some travelling together and did a UK and Ireland trip together. This is us in front of the Cliffs of Moher.  I’m finishing up the summer as the newest judge on MasterChef Vietnam.

Aug 2015

The dog days of summer

The dog days of summer are over…well, almost. With just a few weeks before our little girl starts pre-kindergarten, I start the busy hiring season at work and the husband will likely be swamped covering our Federal election, I wanted to make sure we spent some good quality time together.

We’ve had so much fun together as a family unit but vacation season can certainly take a toll when one lives with a challenging autoimmune disease like neuromyelitis optica (NMO). Eating all the bad foods (this year I dubbed it the “butter tart tour”), staying up late, neglecting to exercise and drinking a lot of wine can cause havoc on the immune system. And the heat…the endless hours outdoors makes my nerves scream in pain.

But I refuse to let this disease dictate how I live my life. We’ve kept ourselves so busy it’s tough to remember everything we did but here’s an excerpt of our adventures:

-We spent almost 2 full weeks and a few weekends at the family cottage, swimming in the lake and at the beach, hiking, touring a cranberry bog/winery, and enjoying the outdoors with fires and s’mores.
-My best friend Andrea and I took Sophie to the Art Gallery of Ontario where we participated in clay play.
-The PanAm Games were hosted by our home town of Toronto. We attended aquatic diving and a bunch of free music events.
-My husband’s distant relatives visited from Norway so we spent a weekend acting like tourists in our own city, visiting the CN Tower, the markets and sailing Lake Ontario.
-We visited The Toronto Zoo (we love the pandas) and African Lion Safari (a game reserve).
-We biked long trails, golfed and took up running again.
-We attended a few street festivals like the Night Asian Market.
-We enjoyed the outdoor pools, splash pads and Centre Island, which is home of Centreville Amusement Park.
-Our Toronto Blue Jays have done well this year so we attended a few games already.
-Remember drive-in theatres? We piled the trunk of our car with pillows and watched Minions.
-And we’ve had a lot of ice cream. We love peanut butter chocolate anything.

We hope you’ve enjoyed your summer to the fullest. Next week we’ll be posting our favourite summer pictures. Best of health to each of you.

Aug 2015

Just for fun, NMO


It’s The Little Things

To say that this summer is not going smoothly, would be an understatement. On June 25th, I got a call that no one ever wants to get: my husband had suffered a major heart attack at work. He was rushed first to a nearby hospital and then transferred by ambulance, with lights flashing and sirens screaming to our local trauma hospital for emergency surgery that would save his life.

Two weeks later, his complained of seeing “spider legs” in his left eye. An urgent appointment with an eye surgeon reveled his retina had torn and he had a sizeable hemorrhage, rendering him blind in the left eye. He underwent another emergency surgery, this time to save his eyesight right there in the office while I held his hand. Two weeks passed and the hemorrhage had not even begun to clear, so he had a second surgery on Friday to remove the blood so his eye can start to heal.

All of this has been traumatic and stressful on so many levels. Usually, I am able to take things in stride, but this was a heck of alot to deal with all at once, especially since I’ve had two rounds of IV steroids since the beginning of June and have not been feeling well myself.

On one particularly bad day, I called my best friend and had a bit of a meltdown. (I blame the steroids!) Sometimes it’s okay to not be okay and it’s a blessing to have someone in my life who really understands that. Later that day, I was tooling around online and came across a shirt that perfectly illustrated how I was feeling at that moment. My best friend saw it and ordered it for me, saying I had earned it.

This is it:



I love it. Sometimes life is hard. Sometimes it runs you over. Sometimes you just have to take a break and say NOPE. It’s a good reminder that sometimes coping with the hard stuff means having moments like this and giving yourself permission to feel how you’re feeling. I am working on this. Meanwhile, I will wear this shirt and keep taking things one day at a time. It’s the little things that help me cope.

Aug 2015
POSTED BY Lelainia Lloyd

Getting back to the regular schedule program

At the beginning of July I got news from my neurologist my CD 19 count is not absolute anymore and I need to schedule my Rituxan. I was really hoping to make it to September to breastfeed Alana but I had to give it up when I had to do Rituxan. I do feel very lucky I have gone over a year since I had my last Rituxan infusion. Since it has been that long I had to two different rounds two weeks apart. So I had the fun battle of drying up my milk and the aftermath of Rituxan. I had people come and help me with the kids for several days so I could recover. I was not hard on myself about not being able to breastfeed anymore since I struggled with producing enough milk for Alana. Also had to look at it as I would rather get treatment and be here for my children rather risking having a horrible attack.

Now that I am done doing my Rituxan I am back on my strict diet staying away from foods that cause inflammation in my body and eating healthier. Also started working out with my personal trainer three times a week. It is so hard getting back into the program of eating healthy and working out. I have a goal of losing 50 more pounds in the next several months. I know I can do it, I really need to focus and dedicate myself to the diet and workout sessions. I lost over 60 pounds before I became pregnant with Alana so I know I can do it! I think the hardest part is the diet and staying away from all the sweet stuff, dairy, and gluten. I forgot how many things have gluten and dairy in it. Eric grew a garden this year so right now we are getting a lot of homegrown vegetables. It is so fun to take Allen down to the garden to pick vegetables. I will keep everyone posted how I am doing back on the program.

I want to stay healthy as much as I can for my kids. With two kids to take care and taking care the household work it is sometimes very overwhelming. I always ask myself “ How do people have more then two kids?” It is pure chaos at my house sometimes with two kids needing my help. I am working really hard to get the kids on the same nap schedule so I can have some time to myself and try to get more things done. So far I am not having any luck. Allen is getting to that stage where he does not want to take naps anymore and Alana only takes a really good nap in the morning and then cat naps in the afternoon.

I have also learned with two kids I can only run about 3 errands maximum before one of my kid’s starts having a complete meltdown. The days seem to fly by for the most part since I am so busy. I am so fortunate to be able to stay home with my kids and watch them grow everyday and How Allen is really starting to love his sister and loves to play with her. Watching my kid’s interact with each other is so much fun! It really melts my heart when Allen tells his sister he loves her and gives her a kiss. Alana really loves her brother she laughs at him all the time and just will watch him across the room. I hope they have a close relationship. I just love my family and we are enjoying our summer with each other!

Aug 2015



Advocacy Update



Last month, I got a surprise email that the MS Society of Canada was featuring me in their MS Research in Action newsletter. What was really great about this was that they also included a link to the advocacy video from the NMO Patient Day in Los Angeles which took place in early March this year. This publication goes out across Canada, so it was an amazing opportunity to bring awareness to NMO. If you’re interested in reading the full article, along with the rest of the publication, it’s here.

I am a Community Representative for British Columbia. What this means is that I am a part of the medical grants review committee. Last year, I reviewed 24 of 96 Personnel grants. This was the first time anyone living with NMO was at the table. I was incredibly happy to be participating as a member if the NMO community and advocating for those living with MS and allied diseases. I was extremely honoured to have been asked to serve a second term. Reviews will begin in late November and I will be flying out to Toronto for the review meeting mid-January. I am excited to dive into the work. If you’d like to know more about this process, you can find it, along with my profile here. Click on where it says “Full interview” underneath my profile.

In the meantime, I have been doing some consulting on various medical projects as well. It’s been really great to be invited to give my feedback and to have a small hand in shaping the outcome. In finding ways to use my strengths and skills to support the work the Canadian MS Society and the Guthy-Jackson Charitable Foundation are doing, I am fighting back against these terrible diseases. We all have a part to play, whether it be by raising important research dollars, raising awareness, advocating for better treatments or participating in clinical trials. The truth is, as patients, we are powerful beyond measure and the best way to know what’s going on is to be a part of it.

That said, I want to thank everyone who took a moment to share their thoughts about the new NMO Patient Card that I posted about last month. I hope that it will be helpful for those who will use it here in British Columbia. Perhaps over time, other NMO centres can adopt the idea and adapt it to reflect their clinic’s contact information. My fingers are crossed!  If you believe it’s something your clinic should have, I strongly encourage you to have that conversation with your local researchers and clinicians. That’s how this whole thing came to be in the first place-it began as an idea, which was then shared in conversation. Our care teams can’t help us if they don’t know what our needs are. It’s up to us to communicate with them.

Aug 2015
POSTED BY Lelainia Lloyd

Despite NMO I have a 3 year old now!




This past weekend we celebrated Sophie’s 3rd birthday and yes, it was elaborate. In truth, I know I can get, um, well, a little overboard but I can explain.


Sophie’s birthday is technically the end of this month but as a “long weekend baby”, we’ll probably always celebrate it a week early with our family and friends. On her actual birthday we reserve the day for just the three of us as a family unit.


Sophie, like all other children, is a miracle. But to me, her day is very symbolic and extra special. Living with NMO (neuromyelitis optica) I was told having children was not going to happen. They said it was dangerous to come off my meds, reckless, not enough medical evidence, etc. To Mike and I, that was just more heartbreaking news. But I worked hard to get back to an acceptable health. And I did my homework about IVF. Then I begged and pleaded my team of doctors until they agreed, with significant warning, to let us give it a try.


And then there was the entire IVF process…that’s a whole other post.


But in the end, we beat this disease just a little bit because we have her, our miracle baby. And every year on her birthday I’m reminded of how grateful I was and still am for all the love and support from our family and friends and doctors and medical advancements, and (I can go on and on – this is such a long list).


And my heart breaks just a little bit more when I think of how NMO might rob me of time with her. This month has been tough knowing we’ve lost one of our big advocates, Candace Coffee, and how her twins are just a year younger than my little girl.


So yes, I throw a party. I take months ahead of time to plan intricate details around her theme (this year it was “Princess”) and we celebrate. For this I won’t apologize, be judged or scolded.


And as I watched her have an amazing time with her new school friends, dance class friends and family friends, my heart is filled with more happiness than I could have ever imagined. We beat NMO a little bit yesterday, today and if I have anything to say about it, for a really long time tomorrow too.

The royal princess table setting for 12 kids.


A special guest, Rapunzel, surprised the birthday girl with a visit.

It wouldn’t be a party without a royal snack table.


Hummus carriage (with zebras because we couldn’t find small horses).

Glam station for when the royal guests arrived.

And special cupcakes with ring toppers that each guest brought home. 11745600_10153490885309461_5620079337406472899_n

The bouncy “castle” was a real hit. cwvDm9asA3Lw9ZNWAbl5esWzZw-1

Her royal highness, Princess Sophie, is now 3 years old.11753743_10152960304720824_6670494545840344038_n DSC07119 DSC06976