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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#TOUGHLIKEME

On September 20th, 2 days before my 5 year anniversary from my first major neuromyelitis optica (NMO) attack, which was a transverse myelitis (TM) attack that left me in a wheelchair for quite some time, I managed to finish a 10 kilometre run with a few members of my family. Originally encouraged by my Uncle Roy who just turned 65 and is planning to run 5 major world marathons, he set out to encourage us younger family members to get active.

This is my family pre 10k race. We’re all still so shiny and clean here. Note that it was really chilly (only 8 degrees celsius) but we warmed up quick!

before the run

 

This is me with my biggest supporter (mainly ’cause he listens to me whine a lot), my husband, Mike. After all these years, this is probably my favourite photo of us.

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My pre-race message to other NMO patients. I call out other patients of any disease to find their #TOUGHLIKEME moment and be your own hero.

My uncle led us in a big team huddle with some inspiring words.

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And finally after the months of training and hard work, here’s my finish to my run.

This is my family after the run. My Uncle Roy (the R) made us all t-shirts to represent a letter in our last name.  It was rather fitting to run it with my cousins and Uncle and Aunt. When I think about it now these are a few of my biggest supporters especially during my early days of NMO. My uncle in black didn’t run it but he jumped in the photo to be our “space” in our last name. Don’t get confused – van Amerom is my maiden name but I’m now legally (and proudly) a Drolet.

family pic

This is me (in the middle) with my cousins, Allison (left) and Gudrun (right). Allison barely trained but she raises a bunch of kids and runs a farm/vineyard so she’s always running around. And Gudrun ran herself thin for a few years now and was able to keep up with her brothers who are total machines. I’m so proud of both of them.Zoo6

 

To check out my time results compared to all of the other 3000 runners click here. I finished at 1:14:11, which beat my goal of 1:15 but just barely. I’m already trying to decide which run I’ll tackle next.

Allen’s View of the World

Allen has learned how to take pictures on my iPhone and his tablet in the last few months. Eric came up with a great idea for my next vlog to make a slideshow of all his pictures and what the world looks like through his eyes. So I hope you all enjoy we got a kick out seeing what he likes to take pictures of.

 

 

13
Oct 2014
POSTED BY Erin
DISCUSSION No Comments
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How does NMO define you?

There have been various research studies published by the International Committee for the Study of Victimization that look at people who have suffered serious adversity, everything from disease, prisoners of war and accidents and then continue to survive. Their studies have categorized people into three groups: those who were permanently dispirited by the event, those who got their life back to normal, and those who used the experience as a defining moment to make them stronger. I believe they call it the “hardiness factor”.

Over the years I’ve met NMO patients and their caregivers (because disease affects our loved ones too) in all of these groups. To say the first group saddens me is an understatement – I’ve personally come dangerously close to giving up so I completely understand the feeling. In fact, I’m sure I’ve done the range of groups several times over. When I was first handed the diagnosis all I wanted was to get back to normal. To this day I’m still not sure I’ve ever really acknowledged my true feelings about the diagnosis and all the events afterwards. Most days living with NMO is just a forced lifestyle change but every once in awhile I like to push the limits and make a point of trying to live life to the fullest. I know there are other patients far worse than me, some in wheelchairs or walking aids. Having experienced that temporarily I know that could easily be my reality too one day so I in that sense NMO defines me and how I challenge myself.

As of a couple of weeks ago I’ve been sporting this new accessory. DSC_0499My uncle, who just turned 65 yrs old, is a world marathon runner. He encouraged my entire family to participate in a 10k run coming up this fall. When I received the first email from him my initial reaction was that it just wasn’t possible. I haven’t run or even tried since my diagnosis. In my previous life I’ve completed a few runs and I always found it exhilarating. After several more nag emails I thought I’d take our pug for a longer walk and see how that went. Before long I was working through the back pain and I registered both myself and my husband towards a new fitness goal. That went well for several months. I was even running up to 5k regularly every other morning at 6:15am. But then I got brave and stubborn. A combination of limited feelings in my legs and being head strong led to damage in my ankle and this very unattractive air cast for 4-6 weeks.

So here I am 3 weeks before this run and I want it so bad. I’ve taken the cast off at home as much as possible but it still hurts more than I’m willing to admit. I’m a mix of anger, disappointment, demotivation and pent up energy. This will be my third attempt at this particular run having become ill with NMO and bronchitis twice before. And there are other family members registered who I don’t have a high opinion of anymore and I’ll be damned if they run it but I don’t.

This run is personal for so many reasons.

As of right now I don’t know if I’ll get to run it. At this point I don’t feel I’ll be ready. I’m still hoping to try but won’t at the cost of permanent damage. This injury breaks my heart but not for the obvious reasons but because the last several months have been a glimpse of who I used to be and I miss her.

Guide Dogs for the Blind

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I was recently in the Bay area with my husband, John, as part of a fundraising effort for the Guide Dogs for the Blind, a school training labrador and golden retrievers to become working dogs. I led a cooking workshop for the recipient of the silent auction item (a gastronomic evening with me) and her fourteen guests. After the interactive culinary class, we enjoyed the three-course dinner together al fresco at Joan Boyd’s home in Napa, owner of Boyd Family Vineyards.

The day before the dinner, John and I visited the GDB campus in San Rafael. It’s a gorgeous campus—I mean, who can beat that California climate and scenery? (Well, I guess the scenery would be of little value to the school’s human students.) It was nonetheless a nice getaway from the Houston heat, and with wine and puppies, what else could I ask for?

John and I got to experience walking with a guide dog (yes, John was blindfolded). We strapped the GoPro to our heads—the footage will later be made into a Blind Life YouTube episode. Best of all, we had puppy playtime! How could you not love those pups pictured above?

A future guide puppy is specifically bred and born in-house at GDB. At about 12 weeks, they meet their raisers, or volunteers all over the country who foster the puppies—socialize them and give them basic training—until they’re over a year old. THen the puppies return to the GDB where they receive additional training to become a guide dog—think of it as their master’s degree.

Owners are matched to dogs by personality, lifestyle, needs, even walking pace. Humans have to be trained on how to work with their guide dogs, too, so potential owners come stay on the GDB campus for two weeks for training. The GDB is set up like a cozy college campus, complete with a cafeteria with customizable menu, individual dorm rooms, a student center/union, a gym, and so on. At the conclusion of the two-week program, there’s even a little graduation ceremony for the dogs, during which they’re officially given over to their new owners. So cute.

I’ve thought a lot about getting a guide dog over the years, and after my visit to the GDB, it has become a more serious consideration. To learn more about the GDB, their mission, programs, opportunities, how to become a puppy raiser, and how you can support, visit the Guide Dogs for the Blind website.

19
Aug 2014
POSTED BY Christine
DISCUSSION 1 Comment

Jenna’s trip to Mexico (2014)

We’ve just returned from a beautiful family trip in Mexico again. I love Mexico because of the calmness, the air, the kind hearted people and of course, the warm weather. We once again stayed at a Karisma property, which we were introduced to several years ago when we were planning our wedding. We were scheduled to be married in Jan. 2010 at one of their adults only properties but had to cancel in Sept. 2009 when I became really sick with neuromyelitis optica (although at the time we thought it was just transverse myelitis).

At this Karisma property it is a family resort but they still offer the same caliber of wedding we had once hoped for. Now I have to say that we had a beautiful day in July 2010 here in Toronto but geez, for the entire week every time I saw another bride go all teary eyed down the beach I got a little angry. I’ll be the first to say that I’m ridiculously happy – I have a wonderful marriage and the most amazing little girl as a product of that – but this was the first time I felt such rage at NMO for robbing me of something. For the last 4.5 years I’ve just dealt with this stupid disease always saying ‘this too will pass’ but I dunno, I think I’ll always be angry at NMO for taking away my beach wedding.

For those of you with NMO wondering what flying is like, I’ll tell you that it’s less fun for me now than it used to be. Even though we use the stroller friendly/handicap line through the security checkpoints, the airport feels like you’ve run through a gauntlet. I find sitting still for extended periods of time painful and within the hour my spine swells, the pins and needles return in full force of all extremities and I can always count on an eye ache. The worst part is having to suffer in silence because once you take off there’s really nothing one can do except pray, try to sleep and/or drown myself in the horrible inflight movie. There are things I do to minimize the flying experience. The day before and after the flight I reserve for sleeping/resting. I stay hydrated and take a pain killer before I board. During the flight I get up and head to the bathroom to wash my face, which I find helps keep me calm. And I remember the destination is either a happy place or home, sweet, home.

Sophie truly enjoyed playing in the sand and experiencing new cuisine like guacamole and beach BBQ paella. I absolutely loved the sunshine. It’s been so dreary and cold in Toronto for so long that I had missed the fresh air and the vitamin D. Within a day I felt rejuvenated, more rested and the exercise of swimming, walking and smiling almost made me forget I have NMO.

 

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Our Cruise Vacation (and the chain of horrible events)

For those who know me well it’s no secret how much I suffer from wanderlust. On days when I need a quick distraction I surf the Internet for “vacation porn”, shopping for deals, reading reviews and stalking friend’s Facebook pages for travel photos. So naturally I was thrilled our family, including my mother in law and her friend, were taking a cruise on Royal Caribbean. Now, I’m very grateful that we are fortunate enough to even get a chance to go but so many horrible things happened it was beyond comical. I don’t cry when my neuromyelitis optics (NMO) acts up but a bad vacation will actually bring me to my knees.

Thurs prior to leaving – Sophie comes home with yet another sinus infection.
Friday prior to leaving – I catch her infection…again.
Saturday 9am – Mike checks us into our Air Canada flight for Sunday 9:30am flight.
Noon – news reports poor IT shuts all computers down at our airport.
5pm – we double check flight status for the morning. Website states flight is cancelled.
5:01pm – Air Canada site won’t allow rebook, reservation line is busy, travel agent didn’t even get alert it was cancelled. Advised by travel agent to “just get to the airport”. Alert those travelling with us to hurry.
5:15pm – rush out door. Arrange cousin to meet off highway for dog hand off.
6:30pm – Mike begs counter for last flight to Florida, to Ft. Lauderdale, 3 hours from port of call. No room on any flights to Florida tomorrow.
10:15pm – after several delays, flight finally leaves. Sinus infection feels like my head will explode with flight pressure.
Sunday 1:30am – Ft. Lauderdale at car rental. Their computer system is down too! Wait in short line for long time.
2:30am – leave for hotel.
3:30am – Sophie finally settled for the night. I must send work emails, research baby store since we left the stroller in our hurry.
9am – leave hotel for breakfast, buy new stroller, hit drugstore for cold meds, drive 3 hrs to port and return car rental.
Monday (day 2 of cruise) – Sophie projectile vomits at dinner. Super sick. People give mean stares.
Tuesday (day 3) – I am projectile vomiting from both ends.
Wednesday (day 4) – it is obvious we have a virus. Push through St. Maarten port.
Thursday (day 5) – quietly sick in public stall onboard overhear 2 women speaking that their husbands and son have virus with similar symptoms to Sophie and me.
Friday (day 6) – 3rd port of call, Cococay, is cancelled due to rough waters. Sophie is a nightmare as she is clearly miserable.
Sunday 7:30am – get through US customs faster than anticipated disembarking. Car service to airport I ordered not there yet. We stand in cold.
8:50am – car service finally arrives. We are frozen.
10am – we just miss earlier flight to Toronto. Our 1:15pm flight delayed by 1/2 hr.
2:40pm – flight delayed several times before finally leaving Orlando.
Late evening – Mike now sick. It is definitely obvious a virus was onboard.
Monday next morning – all 3 of us are still sick. I work from home. Find out best friend’s Grandpa passed away and other friend’s Dad had heart attack while away.

Despite all that (and more that just isn’t appropriate for a public blog) we did take some nice photos that offer a perception that we had a lovely time. I think it’s safe to say we won’t be travelling any time soon as we’re happy to sleep in our own beds.

This is us on formal night…right before Sophie became horribly ill all over our formal wear.

 We’re both horribly ill here but that didn’t stop us from enjoying the sun and surf.  

Sophie on a nature conservation tour in St. Thomas.