Happy lunar new year!

Happy lunar new year! Or as we say it in Vietnamese, chuc mung nam moi!

Growing up, lunar new year, or Tet, was a big part of my life, but sadly, its presence is felt less so now that my family, for the most part, lives elsewhere.

This is the year of the monkey, and superstition says if you bear the same zodiac sign, it will be an inauspicious year for you. That means last year, being the year of the sheep or goat, I was supposed to have an unlucky year since I’m a goat myself. Of course, I’m not a firm believer in steadfast superstitions, but just for fun, I did wear red every time I flew on a plane for the first several trips of the year.

There are lots of other traditions surrounding lunar new year,but at its core, it’s a time to pause, reflect, and celebrate life with our loved ones. And when you live with Neuromyelitis Optica/NMO, every day is worth celebrating and giving thanks. After being diagnosed with NMO and losing my vision, I’ve gained a different perspective on life. I’ve learned to take things less for granted and, even more so after MasterChef, say no to things that don’t bring me joy or excitement.

This year is specifically the year of the fire monkey, which is supposed to be a fickle but good year for new beginnings. We’re warned not to take on too much lest we abandon our new projects (just say no!), but it’s also a perfect time to go back to school, start a new business, take on new hobbies, etc.

Wishing all of you a joyous, prosperous, and healthy new year.

10
Feb 2016
POSTED BY Christine
POSTED IN

Just for fun

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Vermont in December

As we approach Christmas Day I am bombarded with the usual holiday insanity of planning, parties, gift wrapping, and festivities. So right before the busy holiday season I booked a road trip for us to the beautiful state of Vermont. There’s nothing more I live for than the quality time I spend with my family together and I wanted to make sure the 3 of us got that in before our attention wandered. We stayed at Smuggler’s Notch Resort, a ski property hailed as the #1 family resort on the east coast and unfortunately (or fortunately depending if you’re not a fan of the cold weather) there wasn’t any snow except for on the top runs of one of the mountains and on the beginner hill.

After 7 years of trying to learn how to snowboard, last year things just clicked so I was really looking forward to seeing how well I’d do this season. This was also the year I decided I’d let Sophie try skiing.

Sophie is 3.5 years old now. I started her in dance when she had just turned 2. At the time I knew she loved music and after a year of weekly classes, Sophie surprised everyone with her confidence on stage. But watching your child go barrelling down a ski hill, even the bunny hill, is something I wasn’t sure I would ever be ready for. Maybe it’s because I’m actually not the greatest on the mountain, my fear of heights or that no parent wants to see their child get hurt but I secretly hoped she’d refuse to strap on the gear and quit. Then we’d try again next year.

But apparently I’m raising one tough kid.

After a few runs with her coach Sophie figured out the magic carpet, balance and how to go down the beginner hill. In fact, she announced that she wanted to do it herself and from that moment no one could help her. By noon on her first day she was focused, confident and having a ton of fun. And she taught me an important lesson.

Sometimes I think I’m up against a challenge or an uncomfortable situation, like having to stand by helplessly and watch my child figure out a dangerous sport. But in reality, it wasn’t tough at all. In fact, had I not left Sophie to her very capable coach I might have projected my fears onto her. That day Sophie taught me that things aren’t always as they seem. Tough situations might actually be challenges where we learn something about ourselves, and our kids.

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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.

31
Aug 2015
POSTED BY Jenna
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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.

25
Aug 2015
POSTED BY Jenna
POSTED IN

Just for fun, NMO

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Snowboarding without Sight

This should be the last you hear about snowboarding for the season.

Following up on my January post about adaptive skiing and snowboarding and Jenna’s post last week about her family trip to Whistler, I’m posting my most recent Blind Life YouTube episode called How the Blind Snowboard. My husband, John, took footage from our Colorado trip and put together this episode highlighting our winter adventures from snowmobiling to snowboarding. NMO has taught me the true meaning of carpe diem, and I’ve become much more adventurous and brave since my diagnosis years ago. I figure, if I can survive NMO, I can do anything. This video is proof that you can still enjoy life in spite of Neuromyelitis Optica/NMO and vision loss. Happy watching!

23
Mar 2015
POSTED BY Christine
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Video

Snowboarding with NMO

A couple weeks ago my family took our annual trip to Whistler, British Columbia. Even though my husband was the one to fall in love with the city before me, I’ve come to really look forward to the fresh air and now, even the snowboarding. Let me take a few steps back…

When I first took up snowboarding it was on a whim, or rather a misinterpretation from my therapist. I was in my mid 20s, divorced, I moved to a whole new city leaving my friends and family and even declined a promotion to chase something I couldn’t quite explain to myself. I knew I needed help figuring out what I was going through so I found a therapist I really liked and we used talk therapy vs. medication. She recommended that I find something to commit to and stick with it. My husband (boyfriend at the time) wanted me to try snowboarding so on a whim I marched into a sports store, spent a ridiculous amount of money on all the gear and headed for the bunny hill thinking snowboarding would be the thing I could commit to. I like the outdoors, I’ve always been somewhat athletic and I’m a bit of a thrill seeker. What a mistake that was! Despite the beat up tailbone and bruises to my body and ego, I kept going. Then NMO happened.

When they tell you that you’ll likely never walk again or at least really struggle you either accept it or you make the decision to prove them wrong. I made the decision to walk in high heels again and still keep trying to snowboard no matter what. Even though I’d still qualify myself as a beginner because I just don’t have enough time to really practice, I’m still committed. Here I am, still toughing it out on the mountains.

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I’m scared of heights and it hurts like hell. I mean, it really hurts, but this matters to me. Truth be told after the first minute my spine feels like it’s being ripped out from my neck and the pain gets worse throughout the day. And my legs, those useless pieces of garbage…ugh. So I get nervous and pep talk myself on gondolas, chair lifts and when I’m strapping on my board. I’m sure I seem crazy to everyone around me and I usually don’t disagree. But the ability to face my fears – of heights, of commitment, and of one day never walking again – when I get to the bottom of that mountain, that’s euphoria.

They say with snowboarding that one day it just clicks. I felt like this year it kinda did for me and right from the get go I was able to put together turns and do my dreaded toe turns without panicking and choosing to bail out. I’m wondering if with life that one day it just clicks for me too.

Here’s a sample of my scared rambling (you’ve been warned) just before I head down a new run. And another video showcasing my (lack of) talent.

http://youtu.be/pnLBWV6rFF8

18
Mar 2015
POSTED BY Jenna
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Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!

 

Adventures in Toronto With Jenna

The CN Tower, Toronto

The CN Tower, Toronto

So two weeks ago, I flew to Toronto, Ontario to meet with the Canadian MS Society. I will be speaking about that meeting at GJF’s NMO Patient Day in LA, so I’ll save that story for later. Anyway, while I was there, I had the opportunity to meet and hang out with Jenna after all my work was done. Jenna very kindly took time out of her busy life to be my tour guide.

Tuesday night, after my day-long meeting was finished, Jenna picked me up at my hotel and we went for dinner at Rock Lobster. It was poutine week in Toronto and I had confessed to having never tried poutine. (I know, BAD Canadian!) For those who are unfamiliar with Canadian cuisine, poutine is a French Canadian concoction that consists of French fries covered in gravy and cheese curds. While this dish originated in Quebec, it’s served Canada-wide and there are hundreds of variations. Rock Lobster serves lobster poutine, which is made from hand cut Yukon fries, cheese curds, Nova Scotia lobster, lobster bisque gravy and chives. It was served up in a cast iron skillet. We also shared a three cheese hot lobster dip that was out of this world. The kettle chips they served with it were delicious. I am now on the hunt for something called Old Bay Seasoning so I can make my own kettle chips at home. I think Old Bay Seasoning actually an American thing. I’ve never seen it in stores here on the west coast.

The funky little coffee shop.

The funky little coffee shop.

Wednesday morning, Janna picked me up again and we headed to this funky little neighbourhood to grab tea and pastries for breakfast. Jenna said in the summer time, the street is closed off to traffic and people set up booths, creating an open air market.

Jenna & I having breakfast.

Jenna & I having breakfast.

The inside of the cafe was really interesting. At one end they had an old school candy counter and there were tons of old globes hanging from the ceiling. The cafe area was pretty small, so while we sat and had our breakfast, we couldn’t help but overhear the conversations around us. The locals were pretty entertaining-I kept catching snippets like “…she was only wearing a g-string and a fur coat.” or “Here comes the Russian Mafia!” and a whole debate about the length of one guy’s pants that ended with “I am dressed for fashion week man!” It’s a good thing I had my back to them because they were cracking me up.

Graffiti Alley, Toronto

Graffiti Alley, Toronto

Once we were fed, we jumped back into the car and Jenna drove me to the graffiti alley where Canadian icon Rick Mercer does his infamous rants. This was the one thing I was dying to see. (I adore Rick Mercer!) The alleys did not disappoint-they went on forever and I wish I could have stayed longer, but it was -13C and my hands were getting painfully cold from having to take my gloves off to work my iPhone to get photos. We did however very quickly film my own rant as a joke. Jenna did a great job with my Flip camera and we managed to do it in one take.

A bike around the corner from Tratorilla Nervosa & a shoe gazing selfie inside the restaurant.

A bike around the corner from Tratorilla Nervosa & a shoe gazing selfie inside the restaurant.

We toured around the entire city, stopping at landmarks so I could hop out of the car, snap a few quick photos and then jump back into the car to warm up. Eventually, we had authentic Italian pizza for lunch at Tratorilla Nervosa and a good heart to heart. It’s so great to spend time with a new friend who instantly feels like an old friend and who gets the whole NMO thing.

After lunch, Jenna dropped me off at the subway station so I could make my way back to the airport. My flight home was an adventure-I got a touch of food poisoning, we had MAJOR turbulence (which normally doesn‘t bother me, but since I wasn’t feeling well, didn’t make it much fun) and a screaming baby. (WHY is there always a screaming baby?!?) I was sad to have to say goodbye to Jenna, but we’re both going to NMO Patient Day in LA in just over a month’s time. I’m looking forward to hanging out with my NMO Diaries sister again and meeting everyone from the NMO community. See you soon!

02
Feb 2015
POSTED BY Lelainia Lloyd
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Ski/Snowboard Season 2014-15

If you follow me on Facebook, Twitter, or Instagram, you would’ve known I was in Breckenridge, Colorado, this past weekend to work on my snowboarding skills. And yes, the blind can snowboard.

I didn’t get a chance to visit Erin in Denver, but I knew we’d be rushing in and out of town, and Erin had been going through her own challenges with pregnancy #2 so I didn’t want her to exert herself too much.

My husband, John, picked up snowboarding after he went on his first trip for his bachelor party five years ago. He was subsequently bitten by the boarding bug, and I’d since gifted him a nice board, and he goes at least once a season. Because I don’t believe in limiting myself with my disabilities, I decided to try my own hand (feet?) at snowboarding, if only to have a common enjoyable pastime with the hubs.

My friends had told me they’d seen vision impaired skiers and boarders on the slopes, so after a little online research, I found the Breckenridge Outdoor Education Center, a wonderful facility providing highly trained guides and instructors in all forms of outdoor recreation from rafting to—you got it—skiing/snowboarding. When I first called the BOEC during the 2010-11 season, they had suggested I try skiing with the reason being skiing is often easier to learn than snowboarding. Skiing, however, turned out to be disastrous for me (I blogged about my skiing experience with the BOEC), and I figured out later the reason I’d gotten so much motion sickness was because on skis, you’re elevated so much higher off the ground; I could not feel the earth beneath my feet and thus felt disoriented like I was hurling through space with no idea of where was up and which way was down. With snowboarding, your feet are closer to the snow, and so I felt much more grounded and thereby less nauseous.

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This past weekend was my third time snowboarding in four seasons (I had to skip last season due to scheduling conflicts), and I’m happy to say I did not regress in skill. I am able to board down the easy green run at Breckenridge’s Peak 9 (I think it’s the Silverthorne run, for those of you who are familiar with Breck) with one- to two-handed assistance and verbal cues (as pictured above—I’m on the right and Jodi, my guide instructor is on the left). They say next time, I’ll be ready to advance up to the blues and work on completely independent boarding—woohoo! That’s my goal: to board independently down greens and easy blues with verbal cues within two more seasons.

While so many people applaud my courage (and yes, I admit it takes a certain amount of guts to strap yourself on to a board atop a snowy mountain without vision), I must attribute a majority of my success to the folks at the BOEC. They are trained to assist people of all abilities (I.e. Those with Neuromyelitis Optica/NMO, Multiple Sclerosis/MS, vision loss, paraplegia, quadriplegia, etc.) so that all may enjoy outdoor sports and beautiful Colorado. And if you’re headed to other ski destinations outside of Breckenridge, be sure to look into their respective outdoor education centers. There’s nothing like that feeling of accomplishment to boost your self-esteem and confidence. If I can do it, you can too. Stay warm, be safe, play hard.

27
Jan 2015
POSTED BY Christine
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Disney World at Christmas

There’s something about seeing the castle that made me giddy, a reaction I wasn’t expecting. We never went to Disney World growing up – it just wasn’t something we could afford so I really had no expectation and no real understanding of what I missed as a child. When Sophie was still in the womb I used to talk about all the things I’d want her to experience. Disney was one of them. This year our work schedules aligned and we were able to get away at Christmas, something neither of us had done before. Sure, our family was a little peeved that we went away but for one year it was totally worth it.

Christmas at Disney is, well, magical. Even with 80,000 people it’s a special place. We had planned to take Sophie when she was older and I definitely still will do that but at 2.5 yrs old, she was overcome with joy. With reactions like this:

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And this:

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It was the best Christmas of my life. Seeing her reaction to her heroes, the castle, the parades and the rides will hold memories for a lifetime and then some.

Navigating through a large crowd, standing in long lines and walking all day does take its toll especially for someone with NMO (Neuromyelitis Optica). We stayed at a property close by and rented a car. We started early, took a break mid afternoon for a nap back at the condo then headed back for dinner and the evening parade or shows. On one of the days I asked for a Disability Access Card, which provides a return time on an attraction instead of waiting in lines. I found that extremely helpful because after our first day I secretly struggled with excruciating back pain where my lesions caused a flare up and swelling. If you ever have an opportunity to visit Disney but especially at Christmas, I highly recommend it. Here’s a few more pictures of our trip.

 

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