Summer!

Hi Everyone! We just wanted to let you know that the blog is going to be on hiatus over the summer so we can focus on spending time with our families. We will be back to share our adventures in the fall. Have a great summer everyone!

26
Jun 2017
POSTED BY Lelainia Lloyd
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Putting the FUN in Fundraising!

swag

Volunteer swag

Yesterday was the 5th annual 5 km walk/run/roll for NMO at Rocky Point Park in Port Moody, BC, Canada. We could not have asked for a more beautiful day-the weather was perfect-sunny, but not too hot. (Given how much rain we’ve had over the last 6 months, this was a pretty big deal.)

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Organizers and volunteers were up bright and early to set up at 7 am and opening remarks and the ceremonial ribbon cutting kicked off at 8:30 am.

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Opening Remarks

Speakers included race organizers, Nancy Reimer, Dr. Carruthers, who is part of the NMO program at UBC and Lisa McDaniels, an NMO mum who works with the Guthy-Jackson Foundation. All of them shared about the importance of the NMO walk/run/roll in raising money for much needed research.

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Post Race refreshments

After the race there were plenty of goodies to eat, massages and entertainment.

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Michelle Dean, Me & Lisa McDaniel

There was even time to catch up with friends who had traveled from the US to be with us. Thank you to everyone who participated, sponsored, donated and volunteered. We have such a supportive and generous community.

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NMO Walk.Run Organizer, Nancy Reimer

Did you know that in the 5 years the NMO walk/run/roll has existed, together we have managed to raise over $100,000 for NMO research? That’s amazing! Thank you Nancy for all your hard work to make this possible. I hope you are having a much needed rest today!

See you next year!

12
Jun 2017
POSTED BY Lelainia Lloyd
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This is for my #1 fan and caregiver

Christine & John's wedding day

With our wedding party

Earlier this month on May 8, we toasted to our 7th wedding anniversary. When you have a chronic illness like Neuromyelitis Optica/NMO, the support network with which you surround yourself is of utmost importance. My “squad,” if you will, is who got me through my roughest times. I always acknowledge this fact, and the kindness, compassion, and encouragement I’ve received from others are what makes me happy to pay it forward.

The #1 support in my life is my hubs, John. He is caring but not handicapping. He believes in tough love and always pushes me to do my best and be independent. I joke that I have to do the laundry, wash the dishes, and act as my own tech support at times all because of John’s laziness, but if I’ve learned anything in life, we just never know how long each of us will be around, and we all have to assert our own independence to some degree.

So this post (which was originally published on my own blog) is dedicated to my #1 caregiver, John Suh!

***

I say “happier marriage” because I won’t pretend that I hold the keys to a happy marriage. I say “happier” because it’s relative. Every person is unique, and every relationship possesses different dynamics. What works in my marriage may not work in yours. But after seven years of marriage, I’m happy to say I’m still happy. And so today, as a tribute to our 7th anniversary, I offer you my 7 bits of advice that has made our marriage work so far. Following these tips may not solve all of your marital woes, but I can almost guarantee they’ll make your marriage (or relationship) happiER.

7 Tips for a Happier Marriage

1. Take time out every day for each other.

The hubs and I eat at least one meal together every day. This is a natural activity for us to share in since we both love food. If one of us is traveling, we make some time to catch up on the phone, even if for a short while. It’s important to check in with your S.O. every day.

2. Put yourself first, your partner second, everyone else (including your children) third.

I’m not defending selfishness here. What I’m saying is, we (especially women) often sacrifice so much—our happiness and our health—to make others happy. We don’t realize how beaten down we are until it implodes and manifests in some form of mental breakdown, physical illness, or general unwell-being. My advice is to do things that make you feel happy and relaxed; don’t put your needs secondary to everyone else’s. Pursue your goals, cultivate your hobbies, foster your own life. When you take care of yourself first, you can then find the energy to take care of others. Putting your partner or spouse second also means you’re exercising the true meaning and nature of the word “partnership.” Your children will one day be grown and independent, and it will just be you and your partner again. Don’t become strangers to each other.

3. Maintain your other relationships.

I’m a firm believer in maintaining my independent identity, which means I need my friends, many of whom have been with me far longer than my hubs. We make regular dates with each other to eat, shop, and hang out. We’ll even coordinate all-girls’ vacations, though these have been less frequent since most of my friends have small children now. The hubs also has frequent guys nights where they eat steaks and undoubtedly reminisce about their glory days Al Bundy style.

4. Know which battles to pick.

I get annoyed at the dirty socks the hubs leaves all over the house: on the foyer, by our full-length mirror in the bedroom, on the bathroom floor, underneath the dining table. I sigh every time I go near his bedside table and find a disarray of half-empty water glasses, iPads, tangled cords, unread books, a backscratcher, and (of course) dirty socks. There are many things the hubs does (or doesn’t do) that bother me, but I’ve learned you have to choose your nagging points wisely. Too many battles, nags, and criticisms, and his brain will shut down, and you’ll be tuned out completely and forever. Now my nagging is almost a joke, and I’ve learned to accept picking up after him from time to time. At the same time, the hubs has started picking up his dirty socks sooner rather than later. Learn to compromise.

5. Don’t fight or insult each other in front of others.

No one wants to feel uncomfortable around their fighting couple friends. Keep your dirty laundry behind your own doors, away from your parents, your in-laws, your friends, and your children. The hubs and I have a special code phrase that means, “I’m upset right now, please stop what you’re doing, and we’ll talk about it later.” We hardly ever fight, though, so now we just use the phrase as a joke. But seriously, we’ve been around other couples who hurl insults and argue in front of us, and it’s just not cool. Don’t put people in awkward situations, please. (And if you must know, our code phrase is, “We’re going to go running later.” LOL)

6. Laugh together.

Humor is the single most important aspect of our marriage. No one makes me laugh more than him, and I’d like to think vice versa. Laughter has helped me through some of the roughest times in my life, and I think it’s vital to survival. Life is unbearable if we take it too seriously.

7. Experience new things together.

If you choose to heed one piece of advice, it should be this one. I’ve said it before: life is all about experiences. And the best way to grow in your relationship is to experience new things together. Travel to new cities and countries together. The hubs and I have a world map on the wall by our staircase, and we pin flags on every new city we visit. We like to think of it as “Christine and John conquer world travel.” Eat new foods, cook fresh meals, and try new restaurants together. Pick up a new sport or hobby together. Experiences and memories are things money can never buy, and they increase the value of your relationship. They teach you about yourself, each other, and your relationship.

One last piece of advice is something my professor and Creative Writing Program director, Jay Kastely, said in his 2009 History of Rhetoric class: “Marriage is solely built on conversation. If you can’t talk [with each other], head for the hills. Conversation provides a certain kind of sharing. This kind of sharing nurtures your soul.”

Happy 7th anniversary, Hubster! Do you have any relationship or marriage advice?

29
May 2017
POSTED BY Christine
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Olivia Lannoo

With that golden hair, those piercing blue eyes and the warmest smile you can feel even from just a picture, our NMO community feels a tremendous loss this week. Olivia Lannoo was just 21 years old. She should have, could have, would have been, continued to be a force to reckon with in our world.

It’s unfair, we’re all angry, there are no words to describe our sadness and for all of us still facing another day with neuromyelitis optica we’re all also scared. We do our best to go about our everyday – our families, our careers, our hobbies – until our bodies force us to take a break, we relapse, we have that rituxan and neuro appointment – and we’re reminded that we’re actually sick, some of us more than others, but that’s just today. We don’t know how NMO will affect us tomorrow. Then we fight damn hard because what other choice do we have?

When we lose a beautiful and positive soul like Olivia we’re reminded that it could be us next, which is what makes NMO and its ugly unknown head so scary.

This is exactly why we are all in this together.

Olivia loved laughter and her large and ever growing circle of friends. She had plans to become an occupational therapist. Olivia and her family did exactly what we are all trying to do – live life to its fullest, not let this disease become who we are but instead acknowledge it is part of us now and find a way to move forward.

It seems so selfish to focus on tomorrow but that’s how we can honour Olivia. Reach out and be there for another patient. Finally make plans for that activity you’ve always wanted to do. Educate those unfamiliar with NMO. Advocate for our cause, our cure, for ourselves and for each other.

Olivia, we know you’ll find the rest you so needed. You will be greatly missed and forever in our hearts. To your family who will always be part of our family, know that our hearts are all broken with you. RIP Olivia.

 

Olivia

22
May 2017
POSTED BY Jenna
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Standing Up For Science

On April 22, 2017, I hit the streets of Vancouver to participate in the March For Science. This march was only one of many taking place around the world which included concerned scientists, researchers and citizens. The de-funding and muzzling of scientists is a global problem and affects all of us, whether we realize it or not. Science is not only what keeps us alive as a species but also keeps us moving forward.

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I created my march sign to reflect my personal stake in medical science. I’ve had incredible opportunities to meet and engage with MS researchers over the last 3 years and it’s led to a deeper understanding of the work they do and the fierce commitment they have to improving the human condition. I have also had the opportunity to hear from NMO researchers and clinicians from around the world about the progress they are making in understanding NMO and the clinical trials that are currently in progress. All of this fuels my passion for advocacy and awareness for both NMO and MS and was why I was out there pounding the pavement along with 2000 others on a Saturday morning in April. It was a perfect opportunity to raise awareness on so many levels.

My friend Lori, who is a nurse, very kindly knit me a brain hat to wear to the march and she did a fantastic job. So many people at the march asked me where I’d got it.

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We walked (I’m guessing) about 3 km on the traditional, unceded territories of the Tsleil-Waututh, Squamish and Musqueam Nations, from the Queen Elizabeth Theatre to Science World at Creekside Park. I was pretty ill that day with a fever (I didn’t know until a few days later I had a bacterial chest infection) so a good portion of that walk was a blur to me. I do remember thinking was a privilege it was to be walking peacefully in my city and standing up for the things I believe in. The Vancouver Police Department was there, very kindly stopping traffic so we could march safely.

I also remember thinking of one of my favourite quotes by Rumi that says “There is a community of the spirit. Join it, and feel the delight of walking in the noisy street and being the noise.” It felt empowering to be a part of this community; marching in solidarity and knowing that the same thing was happening in countries all over the world on the same day-there were even a handful of scientists in Antarctica who held their own march!

My favourite part was reading all the signs people had made. My friend Tam had even held a sign making party at her store. This was one of the signs I recognized from her photos of the event:

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The Vancouver Aquarium group had these very cool jelly fish umbrellas they were carrying:

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When we got to Science world, my friend Julie found me in the crowd and we hung out listening to the speakers and entertainers for a bit before I had to head home to bed. Here’s a shot of her awesome socks:

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I am glad I went and would do it again in a heartbeat. (Though preferably not while feeling like death warmed over!)

16
May 2017
POSTED BY Lelainia Lloyd
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The Benefits of Good Sleep

It’s no secret that good sleep, (which is different than just attempting to sleep) is a powerful mechanism we all need. For those suffering from major illness like neuromyelitis optica (NMO), regular, good quality sleep is necessary for maintenance, repair and I’d even go as far as to say survival.

I suffer from horrible insomnia. I know it’s from a list of reasons and I do what I can to improve it but admittedly, it’s a work in progress. Yes, stress is a factor but that won’t change in my life; I’m the type who seeks out being busy and juggling multiple balls in the air.

Another major factor is what I call “painsomnia”. Currently I require pain medication and sleeping pills to get a restful night. I’m not a fan of more medication so I recently worked with a sleep clinic to find a way to manage this better. The result was that pain will always be a factor and staying still for an extended period of time will always aggravate it. Without medication my arms and legs tingle then eventually ache until they are on fire with pins and needles. On a regular basis my dog finds me pacing through our bedroom to subside the pain.

I’ve put into place other coping mechanisms to help with my sleep quality.

Diffuser – I love my essential oils. The soothing smell of lavender or sleep blends help me feel relaxed.

Positive sleep habits – The sleep clinic suggested cognitive behavioural therapy, which puts into practice good habits like no TVs half hour before bed and meditation.

Good bedding – My recent guilty pleasure is nice sheets with calming dark colours. I find loud bedding counterintuitive.

Bedtime snacks – My medication regime even during the day is tough to swallow (ha!) so I find consuming several smaller meals beneficial to tolerating all the pills. But by the end of the day I’m still hungry so I consume light snacks like air popcorn, a banana and drink a herbal tea like chamomile or peppermint.

Wakeup Light – There’s research that says how you wake up will affect your energy for the day. I’ve always hated the jarring sound of an alarm so we’ve now installed lights and quiet piano music that fades on till it’s time to wake up.

Photo credit: Alexandru Zdrobaualexandru-zdrobau-176844

24
Apr 2017
POSTED BY Jenna
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Thoughts on my recent diplomatic work in Jordan

Women's initiative event

Showing Jordanian women how to make buttermilk biscuits

I just returned from a culinary diplomacy tour hosted by the U.S. Embassy Jordan in Amman. It was my first time to the Middle East, and I thoroughly enjoyed it in spite of the turmoil happening in neighboring Syria. The people I met in Jordan were friendly and hospitable, the food fantastic, and the overall experience memorable. I ate the national dish of Jordan, mansaf, which consists of braised lamb shank, rice, and a fermented goat milk sauce. I ate falafel, shawarma, kibbeh, kofta, kebabs, hummus, labneh, tabbouleh, and tomatoes stewed in amazing olive oil called galayet. Perhaps two of the most memorable things I tasted were eggplant and kanafeh. The eggplants were often grilled or roasted and tasted superb—never before had I loved eggplant as much as in Jordan. They would be mashed into yogurt or tahini and made into a dip called moutabel. Kanafeh is an Arabic dessert consisting of melty cheese topped with crispy vermicelli-like pastry, doused in rose syrup, and garnished with pistachios. I loved it, and I’m not even a sweets person.

But I digress…

Mansaf

Mansaf, the national dish of Jordan

While in Jordan, I participated in several events with key messages ranging from women’s empowerment, disability awareness, and youth culinary education. The main takeaways I tried to leave behind were the universality of food and, thus, the relations between America and Jordan and, therefore, humankind.

Petra

Petra: one of the 7 wonders of the world & where Indiana Jones and the Last Crusade was filmed

Every time I am invited to participate in events like these, I am reminded of the bigger picture of my life: that is, I lost my vision, which made my story and accomplishments unique on MasterChef, which allowed me to achieve a certain amount of fame, which I can then use to raise awareness and advocate for social issues like the rights of women, Asian-Americans, and those living with disabilities and/or vision loss. I am also reminded of my fortunate circumstances in that, being a Texan, I was provided certain resources through the Division for Blind Services at the Texas Department of Assistive and Rehabilitative Services; without this agency, I would not have been able to receive orientation and mobility training, learned how to use computer screen readers, go back to school for my MFA, relearn how to cook, and live a more independent life. I feel lucky that I come from a place where such support is available. In countries like the Dominican Republic, where I also recently visited, and Jordan, such resources are still in their infant stages, if they even exist at all.

Arabic dishes

Our dinner spread of Arabic dishes

My message today is just to remind us of our blessings and that the world can still use our help, no matter our abilities and backgrounds. You don’t have to fly to the Middle East for Embassy work; you can just start with small things. Donate $20 to a charity in whose mission you believe. Educate your friends, family, and community of a cause about which you feel strongly. Identify your gifts and talents, find your passion issues, and think of a way to contribute. They don’t have to be big leaps. Remember that all movements started with one person taking one small step forward.

Dead Sea

Dead Sea: A mini-holiday between days of work

I truly believe it’s this attitude that has helped me remain resilience throughout my setbacks with Neuromyelitis Optica/NMO and vision loss. We feel the most joy when our lives have purpose. Today I challenge you to do one small kind thing for someone else. If we could all think and act this way, maybe one day, there will be peace in the Middle East.

Kanafeh

In Amman, I fell in love with kanafeh.

17
Apr 2017
POSTED BY Christine
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#SorryNotSorry

IMG_0395Hi everyone, I hope this finds you all reasonably well. I am still pretty sick and no closer to knowing the why of it. I’ve had a ton of blood tests. Yesterday’s blood draw was nine vials and apparently the mixing of my blood with…wait for it…viper venom (Seriously!) as part of one test. I hate snakes and that little nugget of information totally creeped me out. I am having a CT with contrast later this week to see if they can figure out what’s going on. At this point, I really don’t care what it is, as long as we can make the pain stop.

I’ve been thinking how when I get seriously ill, I struggle really hard to keep my commitments. It’s this hardcore, deeply ingrained thing of wanting to keep my word, but at the same time, I bow out of being social-I can’t commit to hanging out with anyone. I used to apologise for this (because Canadians are painfully polite and we apologise without even thinking about it) but I’ve consciously stopped doing it. At this point, if you are in my life, you know I live with chronic illness and this is part of the package of being friends with me. Sometime I have to withdraw into my own little world as a measure of self-care. (Or survival, if I’m being totally honest.)

It’s been interesting to see how people react to having a friend with chronic illness. I’ve had my fair share of people who simply walked away. In the beginning, it was painful, but over time, I’ve shifted how I think about it. I realized that it has everything to do with them and really nothing to do with me.  I have a sacred circle of old friends who have been there for me, no matter what. They are my rocks. I also have some amazing new friends I would never have connected with if it weren’t for my illness. Many of them live with chronic illness and/or disability themselves, so they get it. There’s a comfort in being a part of a community of people that you don’t have to explain yourself to. We can talk about the hard stuff without it being weird or awkward. (And sometimes, we can laugh about it too!)

I think that serious and chronic illnesses can test any relationship. In some ways it changes who you are. When I am in a lot of pain, I don’t have the energy to be the kind of friend I want to be. As much as I don’t like it, this is part of who I am now and  it doesn’t feel good to have to apologise for being myself.

So….this is me.  I am who I am, no apologies.

04
Apr 2017
POSTED BY Lelainia Lloyd
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How to support others in crisis

Loved one: Its been tough feeling this horrible, dealing with doctors, missing work, but it’s nothing compared to what you’ve been through or go through everyday.

Me: They aren’t the same thing. My normal is different than yours is. It doesn’t and shouldn’t minimize what you’re going through. I’m still here for you, even if just to listen.

Loved one: No, I know…I just don’t know how you deal with feeling like this all the time. 

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There’s a funny thing that happens when you’re diagnosed with an incurable, possibly life threatening, beast of a disease – no matter what ailments affect other people they will inevitably compare their struggles to ours, and more often than not, feel like they don’t have a right to complain to us. I know the above conversation or some version of it always comes from a good place. I know my loved ones would never minimize how difficult my everyday is. 

But we’re not talking about me. We’re talking about you.

I get it, being dealt a bad hand with you or your loved ones health is head spinning. Suddenly there are doctors with different opinions, a foreign language with long terminology, appointments, check ups and tests. There is pain, the emotional sometimes feeling more raw than the physical challenges. It will change your current lifestyle and for some even require permanent changes. Nothing makes you feel more vulnerable than failing health. 

Having dealt with medical practitioners for years has certainly given myself and even my husband a level of expertise we wish we didn’t possess. We’re not regularly vocal about my health but we also don’t hide that I have neuromyelitis optica (NMO). Friends, family, even co-workers and clients will seek us out for advice when they encounter the medical ‘system’. They know we’ve put in our time and are continuous learners and they need to ramp up their knowledge now.

I try to avoid using language like, “well I did this” and never use language like, “it’s not as tough as this”. I will always ask how their body feels but also what they are thinking about, no matter how irrational it might sound. I am grateful to hear them out because many did and still do for me. I let them know I am always hear to listen because their loved ones will also need time to process a new reality.

I am relatable for all the wrong reasons. Perhaps their health challenge is only temporary like a surgery with a recovery period or it is unfortunately a forever deal. Regardless, their today isn’t great and I want to support them like others have for me. 

Photo credit: Evan Kirby