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.

afterrace

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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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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#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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The movie Burnt

Here is a short blog about me recently watching the Burnt. Burnt_Poster_Updated

YouTube Preview Image

And So It Goes…

hives

This is how it started. It got much worse from there.

It’s been a bit of a rough month. In early February, I was pretty sick with a cold. (This is a very rare occurrence for me.) In a moment of desperation, I broke one of my own cardinal rules of “no over the counter medications.”  I was experiencing an itchy cough that would leave me gagging and gasping for air, so I took something to try and help calm it. I was so focused on making sure the medicine didn’t contain red food dye (I am allergic to it and 99% of cough syrups contain red food dye) that I didn’t realize the medication contained acetaminophen, which I am also allergic to. I ended up with swelling and hives that burned like I’d been dipped in hot oil and I felt terrible. It took 6 days of steroids and 10 days of Benadryl every 4 hours before it was under control. I won’t ever make that mistake again!

I am about a week away from my second round of Rituxan infusions for NMO and RA. I am really curious to see if I can get through an entire summer without an NMO relapse. If I do, it would be the first time in 10 years. I dread summer because I always end up having to do IV steroids and I don’t do well in the heat. I hibernate the entire season, going out as little as possible, unless it’s cooler and raining. This year will be an experiment to see if things can be better or not with the new treatment.

I am still working on getting the RA under control. My knee joints have thankfully stopped hurting for now. That’s a huge relief-the pain was excruciating to the point that I was wondering how feasible it would be to chop my legs off. (Okay not for real, but you know what I mean.) My hands and fingers are still painful off and on, but better that they were. I still have what’s being called tendonitis in my right elbow which is giving me grief. It affects my ability to do even the simplest of things and greatly impacts my ability to sleep. I am going to have a cortisone injection in the joint after my Rituxan infusion. I am completely freaked out about this, (I had a cortisone injection in my wrist once and it was awful experience) but if it helps, then it will be worth it.  In addition to Rituxan, I am also doing weekly injections of a chemo drug and taking a heavy duty anti-inflammatory to try and get the RA to settle down. This means I am struggling with a fair level of nausea on an ongoing basis, which is not fun.

So, I am muddling along. I am grateful for the small improvements as they’ve happened and hope the trend towards less inflammation and pain continues. I am not the most patient person, as my friends will tell you. I tend to want to accelerate the rate at which things get done-that’s just my nature. Dealing with all of this has forced me to surrender to the process, which is hard. I am not very good at “wait and see” however, that’s about where things are at.

Wishing those of you who are lucky enough to be able to go to Patient Day in LA in a couple of weeks a safe journey and I look forward to hearing all about it.

22
Feb 2017
POSTED BY Lelainia Lloyd
DISCUSSION 1 Comment
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Happy Valentine’s Day to all our NMO caregivers!

Christine & John at University of Houston fundraising campaign

Me & my hubs

I am, and have always been, pretty independent. Even after I was diagnosed with Neuromyelitis Optica/NMO, I drove to my doctor’s appointments and outpatient treatments alone. Then I began losing my vision because of the NMO, and I continued to live by myself, learned to prepare food and pay bills and do laundry all on my own.

And then I met John, now my husband. He respects my need for independence, but I’ve since learned it’s nice to sometimes count on others, too. Whether it’s reading an expiration date on an item in the pantry, discerning between the shampoo and shower gel in a hotel bathroom, or navigating the New York City streets or the grocery store aisles, it’s easier to ask John than to figure it out on my own.

NMO and vision loss have taught me that it’s okay to ask for support. I’ve learned that most people are willing to assist, and that if you express gratitude, they’re even happier to help.

For that, I value my husband, and I want to dedicate this week’s post, in honor of Valentine’s Day, to all our caregivers, from parents to siblings to spouses to friends. Without you, we’d still survive, but with you, we’re much happier doing so. Thank you for making our lives with NMO that much more bearable.

13
Feb 2017
POSTED BY Christine
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The Holiday Season is Here!

As I am gearing up for the next few weeks it’s going to be very busy time. First I would like to wish everyone a Happy Thanksgiving! We are traveling to Kansas to see my husband’s family this year for 4 days. This time of the year just seems like chaos for everyone till after New Year’s. As NMO patients this can be challenging for us trying to keep up with everything and trying to take of ourselves. I know for me this time of year is very exhausting and for that I need to thank Starbucks since I will be visiting them everyday till after New Year’s.  Once we get back from Kansas I will be decorating the house for Christmas. I am one of those weird people that put up four Christmas trees because I love Christmas trees! Also it’s that time of the year for Elf on the Shelf to appear and this year we are having another elf joining our elf Buddy I love doing elf on the shelf even though I stress about it too much some times. The look on Allen’s face is just worth it every morning when he is looking for Buddy. The following weekend we are staying downtown for one night and will be watching the Christmas lights parade. Then it will be my 35th birthday which I am absolutely dreading to me that means I am 5 years closer to being 40. I think I will have a hard time with that one well I know I will. I recently watched that movie “This is 40.” Yes I will be like her and will be celebrating my 38th birthday for several years. Four days after my birthday I will be doing my Rituxan which we all know that’s a party in its self. Which means I will not be feeling well for a couple weeks. The next thing on my schedule is my husband’s company Christmas party. Which means Eric and I will be wrapping about twenty gifts for the Christmas party gift raffle. Also squeezing in wrapping all the gifts for the kids and family members. I am hoping I will have time to do Christmas cookies with the kids. Started this tradition with Allen ever since he was a baby. Alana was not into it last year but I think this year she will be more into it. Well at least eating the frosting out of the bowl when I am not looking. Then before I know it will be Christmas. We are staying home this year for Christmas so the kids can enjoy playing with their toys.

Even though it will be a hectic time of the year, I am very thankful for the many blessing in my life such as my family. I think we all can to relate to that when it’s the holiday time we forget what matters the most sometimes.

 

 

Why I love Apple technology

**This post was originally published on my blog on October 28, 2016.

This video shows Sady, a woman with cerebral palsy, using Apple technology to edit videos. What’s mind-blowing is the video was actually edited by Sady herself using the very same assistive technology.

Last Wednesday, Apple announced the launch of their redesigned Apple accessibility website, which now includes videos showing how people of all ability levels use Apple technology to achieve vocational goals and do everyday tasks. These videos not only empower people living with disabilities, they also challenge everyone to rethink what a person can and cannot do regardless of abilities.

As you know, I’ve been a longtime Apple fan, and following my TEDx talk about the importance of inclusivity, I’m ecstatic that Apple continues to make universal design a priority.

Thank you, Apple, for keeping the bar high and being a pioneer for adaptive technology!

Signed,

An Apple Fangirl

P.S. In keeping with their mission, here’s an audio-described version of the above video.

https://www.youtube.com/watch?v=gL2Dh4_F2-M

01
Nov 2016
POSTED BY Christine
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