Elf on the shelf

When Allen was a baby people were telling me about this Elf doll that comes the 1st of December and watches their children every day till Christmas Eve to see if they are being naughty or nice. Then at night he flies back to the North Pole and gives Santa the report on their child. I just could not believe what I was hearing about all the rules and to what great lengths these moms have gone to make the elf do certain things. I kept thinking in the back of my head. This seems like a lot of work? But every mom told me it so much fun and to see the look on their child’s face when they woke up in the morning looking for the elf to see what the elf go into that night.

Forward to this last Christmas I broke down and bought an Elf on shelf. A Couple of weeks before December 1st I started looking on Pinterst, The web, and Blog sites for ideas of what to make this elf do cute things every morning for Allen to see and get interested finding him every morning. Finding a way for him to arrive was the easiest part. Buddy that’s his name that Allen gave him arrived in a box with a letter from Santa telling Allen why he was here to visit him and all the rules about not touching him. For the first few weeks Buddy was with us I had it covered what to do with him every day. The one thing I had to do is wait till Allen went to sleep that night and then go set up Buddy. I did not want to do it in the morning since I never know really what time Allen would wake up. Like I said for the first few weeks I was great with ideas for Buddy but after that I would sometimes struggle with ideas for him. As I would look for ideas on the web I couldn’t help but think do some Moms have a special container for all the props for their elf? I could not believe some of the stuff they had their elf doing and how much time it would take to set it up. I am sure when Allen gets older I will have to be more creative but this year I think I did a pretty good job for my first year. Allen was very happy with his elf, he was very sad when he left with Santa for the year. I told Allen he should be back next year if he continues to be a good boy. Now the next question is do I get Alana her own elf the girl version? Then I tell myself that’s just more work and more ideas I will have to come up with. We will see I have a few more years to decide.

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03
Feb 2016
POSTED BY Erin
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Adventures in Toronto

Me in to

Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

Last week I flew off to Toronto to serve my 2nd term as a Community Representative for the Canadian MS Society. This year, I was assigned to the Clinical and Population Health grant review committee, which deals with research related to mental health/quality of life in relation to MS patients. It was really encouraging to know that researchers and clinicians are invested in finding ways of treating the whole patient and helping to address the unique mental and emotional challenges MS patients face living with this life-altering disease.

When I was packing for this trip, I was amused to discover that I actually had more NMO Awareness materials (& swag) than I had clothes in my suitcase. Such is the life of an advocate! It made for a much lighter bag on the way home, which was a plus!

2016 Clinical & Population Health Committee. Photo Credit: Dr. Karen Lee

2016 Clinical & Population Health Committee. Photo Credit: Dr. Karen Lee

It was wicked cold in Toronto-the day I arrived, it was -14C but I believe the wind chill factor made it even colder than that. Walking to the team dinner that night, my legs were totally numb from the cold within seconds. It was a sharp contrast to the +10C (spring-like temps) I’d left back at home in BC. BRRR!!

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After my committee duties were done, I was able to meet up with Jenna for dinner and catch up. She took me to this fabulous Mexican restaurant called Caballitos, which not only had amazing food (which was great because after a long day of hardcore concentration, I was famished!) but they also had a live Mariachi band.

Photo credit: Jenna

Photo credit: Jenna

I can now say I’ve had an up close and person rendition of “Tequilla” played right in my ear!

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Wednesday I “slept in” till 8:30 am (5:30 am my time) and then went off in search of brekki. After breakfast, I had a few hours to explore, so I wandered the streets for 3 hours, taking photos and checking out the city. There’s something really lovely about being anonymous in a strange city and exploring it alone. As an artist, the thing I love best is finding all the graffiti and street art. These elements give texture to a city.

Municipal Hall (Old City Hall)

Municipal Hall (Old City Hall)

I also really love architecture and Toronto has some beautiful buildings.

My next trip will be to LA in March for NMO Patient Day. I had better get my flight booked! Hope to see YOU there!

25
Jan 2016
POSTED BY Lelainia Lloyd
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Blue Monday

Here’s something I didn’t know until this week: the third Monday of January has been named “Blue Monday” aka the most depressing day of the year. Created by a marketing genius in the travel industry, Blue Monday is when New Year resolutions typically end, credit card bills roll in, and you can count that it’s usually cold outside.

Now I don’t buy into any of the hype. Maybe it’s because I’m a realist or maybe it’s tough to break what is already broken (thanks neuromyelitis optica). Regardless, my take it or leave it/it is what it is attitude wasn’t phased by it. Or so I thought.

One of the most challenging things NMO patients face is navigating personal relationships. Most of us are really blessed to have great support networks but on occasion even the best ones can fall apart. Other than the ask for medical advice, the most common thread on the patient support site is on how to manage relationships when we don’t feel good. For those of us living with disease, stress can really affect us and nothing is more stressful than the disintegration of our relationships. Furthermore, it’s tough to have those closest to us be sympathetic to our physical needs when they are angry with us.

Maybe the universe likes to ‘keep it real’ for me as it seemed like everyone around me on Blue Monday was just not in sync. Despite being busy, I will always make time for my friends and family, especially when they just need an ear to listen. And that was tough because I care and I internalize that and by the end of Blue Monday I was exhausted.

So here’s my advice for patients dealing with drama, either your own or that of others:

  • Get a best friend. I am nothing without mine. She hears out my rants (always siding with me) and is the third party of disbelief (I have to tell you what so and so did! Can you believe she did that?!)
  • Put a time limit to how long you’ll deal with a situation. If you must fight take a time out after a set time. If you’re the sympathetic ear, end the call/visit after a certain time frame.
  • Remember, it’s their drama and they just need an ear. If it’s your drama, know what you need to end it and tell the other party. No one reads minds.
  • Get sleep. Eat. Take your medication. Don’t punish yourself beyond the conflict.
  • Get some physical activity. Take a walk, exercise, get fresh air.
  • Laugh.
  • Remember we’re probably tougher than the other person because we have to kick NMO’s butt every second of every day. That gives us an advantage and thus, not even a fair fight.

Four Senses, my cooking show for the blind, premieres this Thursday, January 14th, on AMI

Once or twice a year, I fly up to Jenna’s neck of the continent and shoot my cooking show in Ontario. Together with Carl Heinrich, winner of “Top Chef” Canada season 2 and chef and owner of acclaimed Richmond Station, I host Four Senses, a cooking show on AMI TV for the blind.

I’m excited to announce the third season premieres this Thursday, January 14th, at 7:30 PM EST/PST!

After three seasons together, Carl and I are like old siblings, as you can tell from the above and below promo clips. In all jest, we fully respect each other and, more importantly, have fun together. You can witness the camaraderie growing between us over the seasons.

For the first time ever, I’ll also be doing a live Q&A on AMI’s Facebook page alongside the premiere, so tune in this Thursday at 7:30 PM on AMI TV and/or AMI’s Facebook and ask me anything! Tune in, and chat soon!

11
Jan 2016
POSTED BY Christine
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Ring Out the Old, Ring In the New

Jan20(C)

WOW! Here we are at the tail end of 2015. It’s been a tremendously challenging year for me and so I am glad to be letting go of the old in favour of embracing the new.

I hope everyone had exactly the kind of holiday they were hoping for. Ours was kept incredibly simple-I didn’t put up a tree or decorations, bought small gifts and we had a lovely dinner with our best friends. Part of this had to do with circumstances, which included me falling ill from side effects from the antibiotics I was on and part of it had to do with the desire to consume less. Ever since we moved back in March and downsized, I have come to be more conscious about the things I buy and bring into our home. I was never much of a shopper, but now I am even less so. It’s made my life so much easier having less “stuff” to take care of and instead of giving “things”, our family has taken to giving experiences. We would rather go on an adventure together, see a movie or go out for dinner. None of us really needs anything. Our holiday has become more about the time we spend together and it’s been really nice.

New Year’s Eve, my husband and I will mark the 26th anniversary of our first date. True to our Canadian roots, our first date was a hockey game between the Vancouver Canucks and the Philadelphia Flyers. The Flyers are my husband’s favourite team and if I had known then what I know now…let’s just say I do more black and orange laundry than the team does. He’s pretty obsessed. I feel grateful to be able to mark these milestones, after nearly losing him in June.

My calendar is already filling up with commitments in January and February. I am flying out to Toronto in about 3 weeks to do medical grant reviews for the MS Society of Canada and looking forward to spending time with Jenna while I am there. It’s always good to hang out with my NMO sister! Sadly though, so far Toronto has had no snow. (Again!!) I was hoping this year, there would be some, but it doesn’t look like that’s possible. I guess if I want snow, I am going to have to take a trip to our local mountains. (Not that that’s a hardship!)

On behalf of Jenna, Christine, Erin and myself, I want to wish you all a very happy 2016. May you enjoy optimal health in the New Year and may 2016 be filled with wonderful surprises for us all.

28
Dec 2015
POSTED BY Lelainia Lloyd
POSTED IN

Everyday life

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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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Traveling with NMO

I’ve traveled a lot this year, so much that I now have 1K status on United Airlines. It’s a bittersweet feeling: on one hand, the perks are definitely nice, but on the other hand, it’s a constant reminder of how much time I’ve spent in the air.

Regardless, I still have Neuromyelitis Optica/NMO, and this makes traveling sometimes more worrisome. Traveling takes a toll on the body: the jet lag, the recycled air, the discomforts of being displaced for X days (or, in my case, even weeks). I must say, I’ve become a pro traveler by now. A tee-shirt dress and leggings are my travel uniform, as they offer a pulled together look that’s more importantly comfortable. Always wear slip-on flats or boots that will be easy to take off and on at security checkpoint. Carry a lightweight tote with lots of pockets and compartments to stash sunglasses, wallet, phone, hand sanitizer, lip balm, thin sweater, headphones, and white cane. I just wish I could be more efficient with my packing. I’ve heard of a certain fashion editor whose wardrobe is entirely black and white and gray, so she never has to waste time coordinating outfits. This is smart, but in spite of my vision impairment, I still need some color in my life.

Anyway, with the holidays just a few days away, to ensure safe and happy travels, here is my advice for those traveling with NMO.

1. Stay hydrated.

Traveling dehydrates you. I can tell because my skin gets out of whack every time I fly. Not only are you dealing with the recycled cabin air and pressure on planes, you’re tired from dealing with the crowds at airports and unfamiliar environments when away from home. Drink lots of water to stay hydrated. I often carry an empty bottle with me and fill it up once I get past security.

2. Travel with meds.

I’m one of the lucky few patients with NMO that doesn’t have to travel with a ton of meds. I myself receive the Rituxan infusion, so I only carry medicine for acute symptoms that may arise while traveling. In my small pill jar, I have ibuprofen for general headaches and an over-the-counter sleep aid just in case I’m traveling overseas and need a little help changing up my sleep pattern. As for prescriptions, obviously bring meds you need to take on a regular basis, but don’t forget ones like painkillers or anything else you might need for acute symptoms. I’ve even traveled before with a “just in case” 5-day course of oral steroids (which had proven useful ONCE when I was in Ethiopia and had an onset of transverse myelitis). Don’t forget to carry these meds with you in your carry-on!

3. Schedule plenty of rest time.

Take naps, and don’t apologize for them! You know your body best. I have to admit, this last advice is the hardest one for me to heed myself. I work hard, and I like to play hard, so my rest and sleep are often sacrificed. But I ain’t no spring chicken no mo’, so sometimes, I’ll make sure I get a full eight hours of sleep at night while traveling. Its’ hard, though, because I feel like I must take advantage of a new city by exploring everything it has to eat and so on. But I’ve noticed that I enjoy my travel experiences better when I’m well-rested after a full night’s slumber.

Those are my three main tips for traveling with NMO. Should you unfortunately experience a NMO attack while traveling, I would direct the medical staff to the Guthy Jackson website for more information on NMO, and hopefully you have a great primary neurologist whose staff you can reach at any time to get treatment support.

Safe travels this holiday season!

17
Dec 2015
POSTED BY Christine
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Surviving the Holidays with NMO

As we all can agree with from Thanksgiving all the way to New Years is just chaos for a lot of people. I just survived my first year hosting for twenty people at my house. While trying to manage my NMO, having a terrible cold and two sick kids. For people who have never cooked a Thanksgiving dinner may not realize what a production it takes. It takes me a couple of weeks to organize and make a menu. Then a few days to go shopping and pick up everything then a few days of cooking. Then a few days after Thanksgiving to clean it all up and put everything back. While trying to get all this done I try to rest whenever I can even if that means sitting on a tall bar stool to cook. Try to nap when the kids are napping and breaking up my shopping trips into a few days rather go all day running around to all the stores. This year I had two very helpful helpers my mother and Mother in law. They helped me cook, clean or watch the kids. That was so very helpful.

Next during the busy holiday season is my birthday, which is not so stressful on me I get to enjoy being with my family and spending time with them. Eric treated me to a hotel in downtown Denver to watch the parade of lights. It was so nice and enjoyable for all of us especially the kids I didn’t have to worry about if they were getting cold. Now that Christmas is going to be here before I know it. I am buying a lot of my gifts online this year so I don’t have to load and unload kids and bags from the car. Plus how can you argue with buying most of your gifts online while sitting on the sofa with your pajamas on. I just can’t deal with crowds like I use to before NMO and shopping all day. I simply can’t do it. It wears me down so fast then I am in too much pain to deal with Christmas stuff. I want to enjoy Christmas especially with Allen getting older he has been so much fun this year with Christmas. This will be Alana’s first Christmas and that’s always a fun one too. We also decided not to run around to a bunch of houses this year during Christmas. We all can agree its hard living life with NMO then you add all the holiday things that need to get done this time of the year. It can be very hard and can wear you out very quickly. I just try to pace myself the best I can and do a little bit every day so I am not pushing my self too much.

 

Happy Holidays!

The Miller Family

 

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The Power of Presence

Dr. Tony Traboulsee welcoming everyone to the 4th annual UBC NMO Patient Information Day.

Dr. Tony Traboulsee welcoming everyone to the 4th annual UBC NMO Patient Information Day.

This past Saturday was the 4th Annual NMO Patient Day at the University of British Columbia. I had planned to write about all the things that were shared; clinical trial updates, pain management, NMO cognition, fatigue & quality of life and understanding antibody negative NMO but I think there was something more important that I wanted to talk about.

When I am in a big crowd, I tend to sit back and observe.

What I saw was people showing up:

 The organizing committee showed up.

 Clinicians showed up.

Neurology fellows showed up. (In droves!)

Research nurses showed up. (One even had two sleeping babies in tow.)

Guest speakers showed up. (One flew half way across the country to be here for us.)

 Patients’ friends and family members showed up.

All these people showed up, for those of us living with this rare disease to let us know our lives matter and that we are not alone. They showed up as our allies and they are powerful, simply by merit of their caring presence.

Those of us living with NMO also showed up. We showed up firstly for ourselves, to listen and learn, but also for one another. We showed up to connect with our fellow NMO patients, to share our stories and to be in the company of others who get what it’s like to live with this life-altering disease. Some traveled great distances to make that connection because it was that important.

The biggest impact in our lives as patients comes from these simple acts of love. It’s what keeps us going on the hard days and energizes us on the good days.

This is our community, where hope lives and breathes.

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Deepest thanks to the organizing committee for all your hard work. We love you!

Thank you also to Dr. Sue Diamond for making UBC NMO Patient Information Day possible through her generous funding.We love you Sue & missed you! Hope you are having a fabulous vacation!

 

30
Nov 2015
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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Do we share similar personality traits?

I am a really intense person. This is not a statement I am proud of but I do consider it a brave omission (because let’s be honest, being called intense is never a compliment). I even have a permanent frown wrinkle in my brow to prove it.

As I write this, we are on our family vacation in Mexico. This is a trip I’ve looked forward to for a really long time because, prepare to laugh folks, but my regular day to day is intense. Between the responsibility of raising a pre-schooler, a company, managing my disastrous health and my inability to go to bed until everything is just where it should be, I found myself counting down the days (yup, there’s an app for that).

In past vacations I’ve found ways to get to that blissful state of unwind rather quickly. Yet here I am, completely unable to just relax. Sure, the weather hasn’t been the greatest and the hotel really messed up our reservation, but what is wrong with me??!! I’M IN FREAKIN’ MEXICO.

I’m convinced there is a direct correlation between personality and neurological disorders like neuromyelitis optica (NMO). At the various Patient Days I’ve been surprised how many individuals have similar personalities. Even though we’re from different walks of life, ethnic backgrounds and parts of the country, there are certain commonalities. I’ve yet to meet another patient who wasn’t passionate – about the people in their lives, their work and/or making a difference – who can’t talk your ear off if they wanted to, and dare I say it, has an intense personality.

Maybe intense is the wrong word. Maybe strong or direct or focused are better words. Or just maybe if intense is synonymous with these other words it isn’t such a bad thing.

And so you all don’t think I’m always insufferable to be around here now I leave you with a few photos of our trip.

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24
Nov 2015
POSTED BY Jenna
POSTED IN

Uncategorized

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