I have NMO. Now what am I supposed to eat?

If you’re like me you probably enjoy the occasional over-indulgence of food and usually the bad stuff. Growing up Dutch-Indonesian our meals often revolved around rice dishes, cooking oils and spices. I’ll admit that food, especially the quality of food, is usually the last thing on my mind. I’m not a poor eater but I am guilty of sporadic meal times, missing meals and binge eating. Having a child corrects some of my poor habits but as long as she’s eaten well and regularly I’m ok.

Since my NMO diagnosis several years ago I’ve really battled with food. Prednisone made me over-eat and the weight gain pulled me into a dark depression. I lost most of the weight only to pack it all back on when I was pregnant and then lose it all again. Over time I’ve read a lot of studies, testimonials and books on how diet can resist or improve neurological symptoms.

But I was overwhelmed.

It seemed like the more I read the more confused I became. Some argue a vegan diet while others argue gluten-free or soy-free. Scared of falling into a trap of another fad diet, I spoke with my doctors who all said the same thing – “everything in moderation.” A couple of summers ago I challenged myself to go vegetarian for 2 months, really just to force myself how to cook differently. What I found was that my body felt better, cleaner and more capable of handling the NMO symptoms. But I love steak too much…

So here we are at present. After more research and coaching from family members who also struggle with disease I’ve now spent the last month on the Paleo autoimmune protocol (AIP) diet. It’s restrictive, tough and unforgiving. The goal is to rid your body of all possible inflammatory foods then slowly introduce them back into your diet one at a time to identify which ones cause havoc on your body. My cousin best describes the feeling of Paleo AIP – “it is so powerful to use food and find control again of your body after so long”. Now, I’m not saying that I will ever be able to stop my regular meds and that my symptoms all magically went away BUT after the first week I already felt better.

I’ve just started introducing rice into my diet and so far there is a limit before I feel bloated and sick. I’m playing around with portions and I’m hoping that will make rice more tolerable. I don’t know if full on Paleo is my solution or even feasible but I know I’ve made a huge mindset change that will stay with me forever.

My gallery of Pinterest fails:

This is supposed to be the meat patties that provide my protein in the morning. They never turn out looking like perfect circle hamburger patties.

 

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Instead they turned out looking like burnt hockey pucks (but they still tasted really good).

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Desperate for sugar (I went into complete withdrawal after 2 days) I attempted to make beautiful coconut flour pancakes. They tasted horrible, like dry flour and no amount of maple syrup was making these better.

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This wasn’t a fail per se but I did miss potatoes. My family really enjoyed this roast.

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How to Look, Feel, and Be Young in Spite of NMO

**This post was originally published on The Blind Cook and has been slightly edited for this blog.

I turned 36 recently. I still consider 36 mid-thirties, but my husband, John, likes to annoy me and say I’m in my upper thirties now. When I was young, 36 sounded so grown-up. Now that I’m actually a grown-up, I don’t feel much like an adult at all. Example: I still shudder when someone refers to me or my girlfriends as women.

“You mean us girls?” I’d say.

At family weddings, I’ll ask, “Where’s the kids table?” because I still classify myself separately from the adults/parents.

Age is often a state of mind. I’m happier now than I was in my twenties because I am more grounded and self aware. Even so, aging does concern me. I actually think I might be better off blind since I’ll never know how many wrinkles have formed. The downside is if I miraculously regain vision one day, I’m in for a total shocker.

Having Neuromyelitis Optica or NMO makes growing older even more bittersweet: a part of you is just happy to make it another day, but the idea of the unknown future of your health can be scary. Because I want to be youthful and healthy as long as possible, there are a few rules to life I follow. In order to refrain from cliche and repetition of my tips for a healthier, happier life, I’m instead going to give you a list of perhaps trivial and inconsequential advice based on my own personal experiences. Heed some, heed none—just let these spark ideas and guide you to your own rules.

3 Things I Do to Stay, Feel, Be Young in Spite of NMO

1. Love my skin.

When I was a teenager, as many southern Californians do, I worshiped the sun. I spent two years of high school in L.A., and I would occasionally skip school for the beach. During the summer, our family drove down to Mexico and camped on the beach. This meant days of being in the scorching Mexican sun from sunrise to sunset with only a tent to shield us from the harsh rays. I was an idiot on one of these trips and only donned tanning oil of SPF 2 the entire time. When I returned home, I was so burnt, I could barely pull my shorts down to use the restroom. Such a dummy.

I’m told I have freckles on my cheeks now, and I’m pretty sure they’re a direct result of all the tanning I used to do. I still love the sun, laying out at the pool, and beach vacations, but now I’m ultra paranoid about my face.

We’ve all heard the sun causes premature aging, so now I wear at least SPF 30 on my face daily, and if I’m going to be outside for an extended period of time, such as when I’m at the beach or a music festival, I slather on the sunblock multiple times and don a hat and shades. (Yes, even though I can’t see, my eyes are still very sensitive to light—even more so now than before when I had vision.) One time, I was even told I looked like a geisha because my face was so white from the sunblock, but I didn’t care. Better a geisha than an old piece of leather.

My mama taught me the importance of skin care when I was young, and I’m sure if she’d still been alive when I was a sun-loving teenager, she would’ve flipped, so I’ve been cleansing, toning, and moisturizing my face since I was 12. Many say I have pretty good skin for my age, and while a majority of it is likely due to genetics, I’m sure a substantial part of it is because I’ve taken care of my skin with a daily regimen for decades.

Now that I’m in my thirties, I’ve added serums and eye creams to my routine. Your skin will be more prone to redness in your thirties, and then wrinkles in your forties—yikes!—which means I’ll be adding some anti-wrinkle solutions to my regimen soon, too.

Some of the products I use are expensive, others are affordable drugstore brands. I would say don’t worry so much about brands, but rather, make sure you’re consistent. Personally, I use a mild cleanser, moisturizer, and SPF in the AM, and remove all makeup, cleanse, tone, apply serum, eye cream, and moisturizer before bed. I exfoliate at least once a week and apply moisturizing masks after stints of travel. And don’t forget the neck and décolletage! Many don’t realize the skin on their neck and upper chest is the same kind of skin on the face, so these areas need to be treated with the same respect.

I understand not everyone can be bothered by such a skin regimen, so for those minimalists, I say, at the very least, use SPF and cleanse.

2. Laugh a lot.

Even if after reading #1 has made you deathly afraid of wrinkles, smile lines are still a thousand times better than frown lines.

I believe humor is vital to life’s survival. Lots of situations and circumstances suck. And while laughing at hardships won’t make them go away, it will eventually make them better, or at least your perspective of them will improve.

One of my professors in grad school said something that I will always remember: “Marry someone with whom you can carry a conversation.” I’d also follow that up with, “Marry someone who makes you laugh.” Because, in spite of heeding advice #1, we’ll still get old and wrinkly, and physical attraction is fleeting. Emotions are ephemeral, too, so life partnerships and marriages shouldn’t be based on passion alone.

It feels so good to share in laughter. Laughter and humor will always keep you feeling young at heart.

3. De-stress frequently and without guilt.

The root cause of many autoimmune diseases is stress and one’s inability to deal with it in a healthy way. I learned after the long phase of getting diagnosed with NMO that sometimes, we need to take a break from life and concentrate on ourselves. If you’re not happy and healthy, your family, friends, and coworkers won’t be either.

De-stressing could mean many things to many people. For me, de-stressing includes yoga, reading, watching TV, massages, spa treatments, walks, naps, a beer, or rocking out to music. Sometimes these involve other people, sometimes not. I’m naturally an introvert, so I need alone time to recharge.

Do something small every day to de-stress: shower or bathe, read, take a walk. Each week, do something a little more for yourself to de-stress: have some wine, watch a movie, hang out with a friend. Do something bigger every month: get a massage, work on a painting or poem, go on a kids-free date with your partner. Then splurge to de-stress at least once a year: go on vacation!

Everyone’s different. Find what works for you, so long as it reenergizes you so you can be at your best in life. You deserve it.

18
May 2015
POSTED BY Christine
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Alana Joyce Miller

I wanted to let everyone know that Alana and I are doing well. Everything went well with the delivery i had her via c-section. we were in the hospital fir four days. My NMO has been doing pretty well. I am currently breast feeding so maybe thats why i am still doing ok with the disease. I am staying very busy with Allen and her, I am still trying to get in a rhythm. I made a video of her photos from since she has been born.

 

 

 

 

11
May 2015
POSTED BY Erin
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The Blur That Was April

The mountain of boxes. All unpacked now, thankfully!

The mountain of boxes. All unpacked now, thankfully!

Life has been super busy since I got back from LA NMO Patient day. For one thing, we had a rather unexpected move. I had 3 weeks to purge and pack up our home which was no mean feat with a fractured rib. I am forever grateful to our son and my husband’s coworkers-big burly men who work in construction who came and helped with all the heavy lifting. We are mostly unpacked and settled in our new home and loving it. We now live on a greenbelt which is really pretty and quiet-it’s like living in a park. The neighbours are friendly and welcoming and just about everyone here has at least one dog, so Indy, our black Lab is right at home. mydragonboating I joined an MS/NMO adaptive paddling group, so twice a month, my husband and I go out dragon boating on Burrard Inlet which is five minutes from home. (I am the token NMOer.)  I am taking things slowly, since my rib is still healing.  So far it’s been fun getting out on the water and seeing the wild life. The first night we went out, we saw 25 sea lions on a log boom. They were just hanging out. Then these little heads popped up- there were half a dozen babies the size of well-fed house cats! It was really cool to see them up close in the wild like that. I got a dry bag for my iphone so next time we see them I can get photos.  On Friday night while we were standing on the dock, I saw an eagle fly over us with a fish in its talons.

At the summit.

At the summit.

Last Sunday my son and I went to experience the Sea to Sky Gondola. I have been dying to go. The tram ride up is about 12 minutes and the view was amazing. We did some hiking up top. I took my DSLR with me and my son and I kept passing it back and forth. We enjoy doing photography together. There are two glaciers you can see from the summit that are just spectacular. I love that in an hour I can be in the mountains. Being in the mountains is my happy place-it’s the place I feel most alive.

My Nursing student, my Medical student, Me, my Masters Student. Missing is my OT Student. NMO content was hidden behind us, but it IS there!

My Nursing student, My Medical student, Me, My Masters Student. Missing is my OT Student. NMO content was hidden behind us, but it IS there!

Wednesday night, was the annual UBC Interprofessional Health Mentors Symposium. This is the program where I work with future health care providers for 16 months, teaching them about patient-centred care. On Symposium night, they have the opportunity to share their learning with the other groups. This year my students created a Jeopardy game and we gave out NMO branded prizes and chocolate. Our board was super busy and we made sure everyone who visited us went away with NMO flyers. It was a great opportunity to connect and help raise awareness. I think part of our popularity is the fact that rare=interesting.

The top piece I chose because it's the type of mixed media collage work I do. The middle (large frame) is a piece of work that was published in a book and the bottom piece (my fist) is a selfie I created about advocacy & activism.

The top piece I chose because it’s the type of mixed media collage work I do. The middle (large frame) is a piece of work that was published in a book and the bottom piece (my fist) is a selfie I created about advocacy & activism.

On Thursday, the MS Society BC-Yukon Division held an MS/NMO art show that I submitted work to. It was really wonderful to see all the amazing talent we have in our division. The reception was lovely and the turnout was really great. At one point, I was standing by my art so a friend could take a photo and these two women came up to take a look. I heard one of them comment on the “longitudinal lesion” she saw which was a picture of one of my actual MRIs that was included in my art piece. So I said to her “Yes and that’s actually an NMO lesion, not an MS lesion.” They both got very excited about that because as it turns out, they were researchers from UBC’s clinic. I was really impressed that MS/NMO scientists had shown up to the art show! Rounding out the week, this past Sunday, I did a phone interview about NMO for the MS Society’s Lower Mainland Chapter newsletter. It should be coming out in the next issue. I talked about living with NMO, the NMO 5 km Walk, Run, Roll that is coming up in June, Patient Day in LA, the Guthy-Jackson Foundation and NMO Diaries. I really don’t know how long the article will be, but I gave Dorit, who is writing the article lots of food for thought. So…I am hoping May is a little bit less hectic. I had TWELVE medical appointments on top of everything else this month and I need a break. I have some art projects in progress and I actually need to have time at home to work on them. (Go figure!)

27
Apr 2015
POSTED BY Lelainia Lloyd
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NMO and Pregnancy – A Patient’s Perspective

Both Erin and I have had successful pregnancies so we’re often asked how exactly we’ve done it. Truth is, no one really knows how we got so lucky (as we all know NMO is so unpredictable) but we did work with a great team of doctors, understood what we were getting into and built a plan that we think helped us stay on track.

Here’s our disclaimer: we are not doctors or ever think our opinion is superior. Pregnancy and NMO is not for everyone. This documentation is meant to provide insight into our journey and what we learned along the way. It’s meant as an external resource for those with Neuromyelitis Optica (NMO) who are considering pregnancy.

Q: I have NMO. Can I get pregnant?
A: Maybe. The reality is that there just aren’t enough documented cases of patients with NMO and pregnancy. There have been some successful cases, like ours and there have been some unsuccessful cases that have resulted in miscarriages and major NMO attacks.

Q: When is the best time for us to try getting pregnant?
A: Ideally you want as much time between your last attack and when you become pregnant. The longer time you provide your body with stability, the better. Our doctors recommended we wait several years before we even started the conversation about pregnancy. This is a conversation that should include your entire team of health care providers.

Q: I’m on a lot of medications. Are they safe for a pregnancy?
A: All immune suppressant medication, including Cellcept, Rituximab, and Imuran are classified as unsafe for pregnancy. Logically speaking, these drugs are meant to slow down an immune system, which doesn’t make sense for an unborn child who is developing an immune system inside you. There are several programs often affiliated with your local hospital that will help you determine which drugs are safer than others for use during a pregnancy, but remember, no drug is 100% safe during a pregnancy.

Q: But if I come off my medication won’t I suffer from another major attack?
A: Possibly. Ideally you want to wean off all unsafe medication (like immune suppressant drugs) and ramp up a suitable substitute (like prednisone) to provide you with some protection while you are pregnant. Only you can determine if you’re willing to take this risk with your body.

Q: Can I still try to get pregnant the good old fashion way?
A: You could but ideally you want to minimize the amount of time you are without the best treatment to protect you from another NMO attack. That’s why both of us decided to pursue in-vitro fertilization (IVF). That way we were able to time exactly when the unacceptable drugs were out of our system with a close date to when we would ideally be pregnant. Talk to your doctors to see if IVF is an option for you.

Q: What happens if I have an attack during my pregnancy?
A: This is something you’ll need to discuss as part of your plan and is very personal to you and your family. You’ll want to discuss your wishes with your team of doctors beforehand so everyone knows what you want should you experience an NMO attack during your pregnancy.

Q: Who should follow me medically while I am pregnant?
A: You’ll want to continue working with your existing medical team as they’ll be familiar with your history but you’ll also want to consider a high-risk obstetrician as some medication, like prednisone, can create additional problems like gestational diabetes, during your pregnancy.

Q: I’m worried about the delivery. Are there special considerations for patients with NMO?
A: It will depend on your wishes and what recommendations your team of doctors will make. Typically, if you’ve had a transverse myelitis (TM) attack you may want to consider a c-section to eliminate any extra pressure on your spine during delivery. Make sure you meet with your anesthesiologist beforehand to identify where the problem areas exist on your spine should you need or choose to get an epidural.

Q: My doctor wants me on my medication right after delivery but I really want to breastfeed. Can it be done?
A: It will depend how your pregnancy goes. If things go well you might have the option to delay your previous course of medication long enough to breastfeed for a period of time. Voice this desire with your doctors to build it into your plan. If you suffer from extreme symptoms or worse, an attack, during your pregnancy you’ll likely want to pursue the best treatment plan available as soon as possible so you can make sure you’re there for your new addition to your family. From our perspective we both chose to breastfeed for as long as it was safely recommended by our doctors – aside from all the regular benefits of breastfeeding, it also helped prolong the feeling of pregnancy for our bodies and allowed for a slower transition from pregnant to not pregnant, providing the opportunity to adjust.

Q: I’m worried I’ll gain a lot of weight during my pregnancy and will struggle to lose it once I start my treatment plan post-pregnancy. 
A: Like all new moms weight loss post pregnancy is a challenge. Build it into your plan to work with a nutritionist and set realistic goals knowing that movement isn’t always the easiest for NMO patients.

Q: Having NMO is already an emotional roller coaster. Can I handle a pregnancy?
A: Only you can answer that. Don’t get pressured into a pregnancy if you aren’t sure you can emotionally handle the unknowns and/or if you do not think your body can handle such physical changes. Be sure to have a positive support system available during the planning process, your pregnancy and available to assist post pregnancy. Be sure you talk through and agree on a plan for worse case scenarios.

12 Tips for a Healthier, Happier Life

Many who have watched me on “MasterChef” or listened to me speak or follow me on social media often wonder what’s my secret to life. Unfortunately, like any other human being (except for maybe the Dalai Lama), I have no key to life. I don’t know what the hell is going on half the time, and the other half, I spend wondering how I’m going to make it through the hour, day, week, or year.

In spite of never having 100% control over my life (which, if you are reading this and have been affected by Neuromyelitis Optica/NMO in some way, chances are you know exactly what I mean), I’ve been doing my best to control what I can. That is, I’ve been on a steady (albeit slow) path towards healthier living for almost two years now, and here are twelve tips I’ve picked up along the way. I must insert a caveat first: I am not going to pretend I have it all together and follow all twelve rules 100% of the time. But I do try to follow them to the best of my ability given the particular circumstance at any given moment. I’m no sage when it comes to enlightenment—even though we know what we should do, we often don’t do it—but these are twelve things I’ve been giving more thought to ever since: (1) being healthy got trendy, (2) I realized I wasn’t getting any younger, and (3) I became more proactive at keeping my Neuromyelitis Optica/NMO in remission.

12 Tips for a Healthier, Happier Life

1. Drink more water. Cook at home. But enjoy the process of drinking and eating.

Water has no sugar and zero calories. It helps make you feel full just a tad bit more so you eat a tad bit less. It hydrates your skin, which is key to looking youthful.

Cooking your own meals allows you to be more aware of how the food got on your plate and what you’re putting in your body. Sure, sometimes the food you make doesn’t taste nearly as good as that ravioli in browned butter sage sauce from your favorite Italian eatery, but the reason why is because restaurant kitchens put a ton of butter and salt in their dishes. If you want more control over the stuff you put in your mouth, cook your own food. It also gives you a newfound, much needed appreciation for animal and plant life. No, that pork chop and green beans you’re eating didn’t come from a styrofoam tray and plastic bag.

My philosophy in life, however, is everything in moderation. This means you should totally enjoy that buttery chocolate-filled croissant with your morning latte—or a big ol’ bowl of Cinnamon Toast Crunch if that’s more your thing—and not feel guilty about it. If you want a meat lover’s pizza delivered to your house, do it. If you have a hankering for a pint of Ben & Jerry’s, get it. Everything in moderation, and don’t forget to do #8 while indulging yourself.

2. Get enough sleep.

Sleep is the time when our body replenishes itself. The brain purges daily stresses and the cells regenerate. We humans function best when we get seven to eight hours of sleep a night.

I used to pull all-nighters in college during final exams and, afterwards, in celebration of finishing the semester. But now I value sleep much more than deadlines and drinks. This is not to say I throw schedules to the wind—I’ve just learned to prioritize: checking off tasks and getting a good night’s sleep are more important than a Netflix binge (that’s what the flu and Rituxan are for).

3. Make time for friends.

In the year following MasterChef, because I was traveling a lot for publicity, writing my cookbook, and finishing my graduate degree, I rarely saw my friends. It took a toll on me emotionally and mentally, and I didn’t realize until the year passed that I was incredibly unhappy. Most of the world treated me a certain way based on what they’d seen on TV, and I missed those around me who knew me before my MasterChef fame and still treated me like the same ol’ Christine that I am.

Now I make it a priority to visit with friends over lunch, dinner, drinks, or just a date at the mall or park. The time you spend with your friends doesn’t even have to be all-consuming. I like to multi-task and have a friend take me to run errands, help me cook, or organize my desk; that way, I’m productive and still spending time with my friend. Being busy is no longer an excuse to let friendships fall by the wayside.

4. Stay physically active: get some form of exercise regularly.

I admit it: I don’t particularly enjoy working out. I hate running or pretty much anything that makes me sweat profusely and gasp for air. But I know keeping my body moving is good for me, so I forced myself to make exercise a habit. The first step is always the hardest, and once I made yoga and high-intensity interval training (HIIT) part of my routine, it became much easier.

It helps to find an exercise or sport you actually like and do it with a partner. The chances of you continuing with a regimen for the long term is directly correlated to your enjoyment of it. I know I don’t enjoy running, so I’m not going to set myself up for failure by telling myself I’m going to run twice a week. I’ve always liked yoga, so I budgeted for a membership to a nearby yoga studio.

Working out with a partner or team boosts motivation. I don’t especially love HIIT, but I find myself working out harder and hating it less when I exercise with John. I’m competitive (in case you didn’t know), and working out with someone else makes me strive harder instead of lamenting about how miserable I am. Misery really does love company.

5. Do something to make yourself look good on the outside—it will make you feel good on the inside.

It could be a new haircut, learning a new makeup technique, buying a new dress that flatters your figure, whitening your teeth, getting a spray tan, painting your nails, grooming your eyebrows, donning a pair of killer heels. It doesn’t have to be eating right and working out, but those definitely help. The change could be either big or small, so long as you like it and it makes you feel good. Looking good boosts your confidence, and confidence goes a long way. Confidence is sexy. Confidence leads to believing in yourself, which influences other people’s perceptions of you and increases your chances of success. Trust me. Haven’t you seen my apple pie moment?

6. Be in the moment.

In other words, be mindful. Yes, it’s been sort of a cliché as of late–everyone’s telling us to be mindful, be aware, meditate–but there’s no denying all the research extolling these acts, so here me out.

I just finished reading Presentation Zen by Garr Reynolds as part of the preparation for my upcoming TEDx talk, and in it is a reference to the Zen belief that we shouldn’t dwell in the past nor worry about the future because neither exists–only the present exists. While it’s still next to impossible for me to carve out time for the sort of daily meditation that would have me close my eyes, think about waterfalls, focus on my breathing, and being aware of how my muscles and hairs feel, I am now of the mindset that meditation can happen all the time. It’s in the yoga I do when I make a conscious effort to breathe deeply. It’s in the silence as I take my first few bites of an extraordinary omakase. It’s in the repetitive motion of my hands when I slice onion. It’s in the relaxation I feel in a massage or shower.

Whether you’re exercising, talking to your family, reading a book, driving, skydiving, or tasting a new food for the first time, be in the moment. Start by simply being mindful of exactly where you are, what you’re doing, how you feel at that precise moment in time.

And please, by all means, if you are having a conversation with someone, do NOT check your phone every time it chimes with a text message or Facebook notification. That’s the first step to being in the moment.

7. Declutter.

Purge, purge, purge! My mom used to say to me, “A cluttered desk or room is a cluttered mind.” While John argues against a tidy desk, I’m happier and more energized when my environment is clean and neat.

I’m in the process of spring cleaning now, and because it can be a daunting chore, I’ve decided to break it down into smaller, much more manageable tasks. Two weeks ago, I cleaned out my wall of shoes, packing away pairs I haven’t worn in years into boxes destined for donation. This past weekend, I did the same with my clothes. This morning, I decluttered a single corner of our bedroom.

At this rate, spring cleaning 2015 may turn into spring cleaning 2016, but in small doses, it’s less intimidating. Decluttering and being organized are especially important if you’re visually impaired. A blind person’s worst nightmare is a desk with a gazillion papers strewn about or a kitchen counter with knives and spices everywhere.

A good rule of thumb when trying to decide if you should keep something or not is to ask yourself, does this item give me pleasure? Be ruthless with your purging. Sentimental things aside, if you haven’t touched or used or worn something in two years, most likely, you won’t miss it.

8. Express gratitude freely and frequently.

I’m grateful that the expression of gratitude has always come easily for me. (See what I did there?) When I was laid up in the hospital from my worst NMO attack ever, when I was paralyzed from the neck down, I wasn’t angry. Instead, I was so thankful for the nurses that changed my sheets, cleaned my bedpan, bathed me, and combed my hair. Even when I was in pain, as soon as the nurse pushed morphine into my vein, the first thing I said when the warm blanket washed over me was, “Thank you for helping me feel better.” Well, maybe not as coherent as that, but it was definitely some form of verbal gratitude. I think I might’ve told the nurse she was the most wonderful person in the world.

Life is not about entitlement. Yes, working hard may reap rewards, but it’s not a guarantee. Bad things still happen to good people. I’ve suffered through some serious stuff like death of a parent at a young age, diagnosis of a chronic disease, and vision loss, but instead of becoming enraged or bitter, all of it has made me more grateful for the little things and for the people in my life.

Gratitude leads to a happier, longer life, so find at least one thing you can be grateful for every day. Gratitude is contagious, and our world could use a little more happiness nowadays, wouldn’t you say?

9. Travel more.

The biggest regret I have about college is not studying abroad. One of the first trips I took without my family was spring break of my junior year. Four friends and I went to New York City, and that was when I was bitten by the travel bug.

America is an awesome country. We have virtually every cuisine from around the world available within our nation. There are lots of things to see and do. San Francisco is different from New York is different from Denver. This is precisely why so many Americans choose not to travel outside the U.S.–Even some their own state–but it’s important to experience a culture other than our own. Traveling to another country pulls you out of your comfort zone, requires you to think differently, which consequently boosts your creativity–read this piece in The Atlantic.

I personally love traveling abroad because it’s a constant reminder that I’m just one little speck in this greater cosmos. It keeps me from being ethnocentric and egocentric. It teaches me compassion and the universality of humankind. It helps me see from others’ perspectives and forces me to understand, accept, and respect cultural differences.

But, like I said, the first step is always the hardest, so it’s okay to start small. Drive a couple of hours to a neighboring town. Take a longer road trip with a friend (remember #3?) down Route 66. Go up to Canada where they still speak English. Then maybe try Mexico or South America. My hope is that you, too, will get bitten by the travel bug and find yourself loving Tokyo, Turkey, or Tuscany.

One thing remains constant though: wherever you go, do as the locals do. Observe, ask (in their language as best as you can), and eat what they eat.

10. Stay mentally active. Keep learning. Try new things.

This kind of piggybacks on #9. It means you should still get out of your comfort zone and push yourself to try new things. As a writer, I’m all about experience. How else am I going to gather material for my next greatest American novel? In fact, one of the main reasons I tried out for MasterChef in the first place was not because I thought I would win or really wanted the title—it was because I figured I’d come back with some good experiences to write about. I figured I’d learn a thing or two about cooking. (Oh boy, did I learn so much more than that.)

Keep your mind fresh and active with puzzles, rowing, flower arranging, beekeeping, gardening, woodworking, speaking Mandarin, Krav Maga, cooking classes, etc. You’ll stay sharp and grow immensely. Learning is fulfilling.

Four years ago, I learned Braille. Two years ago, I earned a Master of Fine Arts in creative writing. Last year, I learned rock climbing. And constantly, I’m learning new ingredients, cooking techniques, and recipes.

I never want to stop learning. In the words of the late, great Steve Jobs, “Stay hungry. Stay foolish.”

11. Say no, and don’t apologize.

I’d written an entry before about how it’s okay to say no sometimes. It’s still a learning process, but I get better at it over time. As a natural introvert, I need my own time to decompress. I need time to myself. This is how I recharge and remain happy and energized. This is how I best perform.

Even if you’re an extrovert, you shouldn’t feel obligated to say yes to everything. Something I now ask myself to gauge whether or not I should take on a project is, Will I be happy doing this?

It sounds oversimplified, but most of the time, it really does help me decide yes or no. The last thing I want to do is sabotage a project or a relationship by saying yes when I really meant no, and then being miserable from start to finish. Everyone tells me it’s so easy to tell what I’m feeling by the expression on my face, so I know I can’t hide my negative emotions. Better to be genuine and honest by saying no than saying yes and infecting everyone with my negativity.

12. Don’t beat yourself up if you break a rule or two…or all twelve.

And last but not least, if you can’t heed a single tip, don’t beat yourself up about it. I am a perfectionist, and so when things don’t go as planned, it’s hard for me not to obsess or feel guilty about it. It’s become a running joke with a few of my friends now: whenever I’m disappointed as a result of some decision I’d made, we shake our fists, look up to the sky, and shout with hyperbolic angst, “I live in regret!”

It’s still something I’m working on, but I’ve made progress over the years. Now I lament for a shorter amount of time. I still grieve my purportedly poor decisions, but soon thereafter, I say to myself, “What’s done is done” or “It is what it is,” meaning I can’t change the past so no use worrying about it.

So there they are,: twelve tips that have improved my life to some degree. Pick some out and try to incorporate them into your life. Or just try one. Or none at all if you’re not ready for it. I’m a firm believer that when it comes to positive change, you’ll be ready when you’re ready.

14
Apr 2015
POSTED BY Christine
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An intimate interview with Nancy Reimer, NMO Advocate

This week we’d like to showcase another “Mom on a Mission” Nancy Reimer, who is the mastermind behind the very first dedicated NMO (neuromyelitis optica) Walk/Run. It’s difficult not to cry reading her candid response to our very intimate questions. Always honest, sincere and tough, Nancy took time to respond to our questions from her home in British Columbia, Canada.

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1. What motivated you to start the first NMO dedicated walk/run?

I think if I am being completely honest, my motivation for starting the first NMO dedicated Walk/Run was anger and grief. We all have our own ways of dealing with the tough stuff in life and for me I felt like if I did not find a positive outlet for my feelings of anger and grief surrounding Riley’s diagnosis, that I would likely go under and not resurface. It was excruciating as a Mom to go through that first year and to not have a diagnosis really until his fourth relapse. To hear the words “no cure” almost did me in, however, it was around that time that the idea to have an event specific to NMO entered my mind. Organizing this event gave me a positive focus…something that I could do in my own community to raise awareness and funding specifically for Neuromyelitis Optica. When I started planning the event, I was surprised that there were others with the diagnosis who immediately reached out to me. It then became something that extended out much further than Riley’s diagnosis.

2. Were you always planning to make it an annual event?

I remember the final weeks leading up to the first ever event thinking, “what if nobody comes”. Silly really, because so many had registered…we ended up with around 400 that first year. I think my thought process was to just see how year one went…then year two…and now we are leading up to year three! Never in my wildest dreams did I imagine that it would ever go beyond year one. It has become this incredible place of support for those who live with NMO and their families. This event has given us all something that we “CAN” do to make a difference. We cannot change the diagnosis, but we can rally together with our supporters and be there for each other while we educate our communities about NMO.

3. What improvements to the event are you planning for this year?

Each year I look at what worked and what did not. I have to say that both years so far have been pretty darn amazing. Last year we added a few more sponsors, a KidZone and onsite yoga classes. We were also delighted to have a local dance school come and do a flash mob at our event. The onsite Sponsors are incredible and most have been with us since year one. When looking for Sponsors, you are asking people/businesses in the community to believe in both the cause and that your event will succeed. You never know what kind of support exists unless you are willing to ask. So for this year, we have all of our amazing Sponsors coming back, some fantastic post-race entertainment and snacks…don’t forget the snacks!!!!

4. Fundraising certainly has its challenges. What advice would you give to those who do so yearly? How do you keep it relevant and fresh?

Fundraising has been a challenge. I struggled a lot with this aspect of the event last year. Our registration fees are part of our fundraising efforts and that is the easy part, but asking for donations above and beyond has, in the past, been a challenge. When you are asking people or businesses to donate, I have found that most need to have that personal connection to the cause for them to fully be able to identify with it. Unfortunately, many do not identify with Neuromyelitis Optica. Some are willing to listen, while others are not. I have learned to give a brief synopsis of the disease and leave a letter with more details and unfortunately, unless they take the time to read the letter or our personal story, I rarely hear back. That was tough for a few of us last year but then as we started to really look at the event, it occurred to us that maybe that’s not what this event is about. Yes, it is so amazing to be able to contribute financially to the cause and ultimately the cure, but maybe our event serves a different purpose. There is nothing that has been so healing to me as standing before that “sea of green” and seeing that visual support all at once. It is several communities standing together, unified in their support of a cause…our cause. There is not a price tag for that…the support onsite on event day is priceless!!!! To me, if I can provide that for the people who have this diagnosis, then I have done my job well.

5. Riley is another year older so he’s another year wiser. How do you feel this event impacts him on a personal level?

This is a tough one. Riley does not often verbalize what he feels about his diagnosis or about the event. He was only 7 when NMO entered his world and I think for him the event has just become a part of that. Perhaps as he gets older, he will realize more, like I have, the magnitude of the support that stands before him and that this event came to be because he was diagnosed with Neuromyelitis Optica. It was created based on his personal diagnosis. For Riley, life has really normalized in the past couple years. The beginning of May marks 3 years of stability for him. That is huge. I remember the panic of that first year and I wondered if this disease would ever give him a break or if it would be a lifetime of relapses, hospitals and rehab centres. I remember the severity of some of his relapses and wondered if he would live, if he would move, if he would walk again, if he would be able to see…we’ve come a long way baby!!! I am beyond grateful for his stability and he is very blessed to have an amazing team of Doctors that have made it their priority to keep him that way.

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6. To quote the Guthy-Jackson Foundation, you’re another “Mom on a mission”. How do you stay inspired and motivated?

My motivation wakes up in the room across the hall from me every morning. I walk in to see the mop of curls on his pillow. My heart still skips a beat when he does not respond right away. I have learned over the past few years, what it means to be a “Mom on a Mission”. Simply put, a Mom on a Mission is a woman driven by something that puts her child/children in danger, and will fight to the ends of the earth to change that for her child/children. I have had that feisty attitude my whole life and I am learning now to channel it into something good. Both of my children know, without a doubt, that I will always fight for them and will bulldoze anything, Neuromyelitis Optica included, that puts them in danger. The last couple of years have been hard for me. Once I got through that initial flurry of the first year full of attacks, diagnosis and then, finally, stability, I saw the damage…the backlash of the ordeal. The thing is, when you are fighting for a child, your child, you do not feel the plummet to the bottom of the totem pole. I was not a priority and have suffered more than most know, as I have become quite good at just carrying on with life. A car accident in the midst of all of this, just added to that by introducing chronic pain into my body. This year so far has been about healing me. I am, as best as I can, making myself and my own health and recovery, a priority. I still have moments where I plummet, but I never camp there for very long. I have a job to do and in order to do that; I need to be the strongest, healthiest version of me. My motivation now reaches around the globe. My fight is no longer just about my child anymore. It is about every person, anywhere, who has received diagnosis the of Neuromyelitis Optica. We are this amazing family and I honestly do not know how I have lived my life up to this point without these incredible people in my life. I am inspired and motivated daily by the people who were brought into my life through this diagnosis. I am so very proud to be a part of a rare disease family that together will find a cure for Neuromyelitis Optica…I truly believe that!!!!

7. Tell us how people can get involved and all the details of this year’s event.

7. You can get involved in our event by being there if you are able to do so. For those who cannot be physically there, we added a Virtual Participant option to our registration, last year, which allows anyone…anywhere in the world, to register for $10 and support our event and the cause. To symbolize that support, I write all of the virtual participant’s names on my shirt and wear it to the event so it is as if you are there. My goal this year would be to have a really full shirt of names. Our event supports two charities… The UBC NMO Clinic and Research Program and the Guthy-Jackson Charitable Foundation. Donation links to both are available on our family website along with the link to register for our event.
You can visit our website to register, make a donation or view our videos, photos and press from years 1 and 2 of our NMO Walk/Run. nomorenmo.com

She’s Here!!

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Congratulations to the O’Brien Miller family who welcomed Alana Joyce Miller into the world on March 9th, 2015. She weighed 6 lbs. 8 oz. and  is 19 inches long.

 

 

 

 

 

 

 

 

 

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Mum and baby are doing well.

 

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Big brother Alan is thrilled with his new little sister! He’s been busy teaching her about monster trucks and helping out at bath time.

Congratulations Erin, Eric & Allen!

30
Mar 2015
POSTED BY Lelainia Lloyd
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Snowboarding without Sight

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

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

23
Mar 2015
POSTED BY Christine
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Video

Snowboarding with NMO

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

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

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

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

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

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

http://youtu.be/pnLBWV6rFF8

18
Mar 2015
POSTED BY Jenna
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