Guest Blogger Heather Sowalla NMO and Teens

A few weeks ago, thanks to the Guthy Jackson Charitable Foundation, I was able to attend the 2016 NMO Patient Day in Los Angeles. And, unlike in other years this year I had a purpose. I was to lead a support group meeting for teens and young adults with NMO the day before the conference. I have to admit, I was a bit nervous. I’ve always been good at public speaking and leading discussions, but this was going to be a completely different situation than my norm.

To be honest, even in the world of NMO, I think people often forget about the teens that suffer from NMO. We hear the stories about children and our older adults, but we don’t hear much from the teen age groups. Where do they fit in? They aren’t really adults yet and they aren’t little kids, so we’re faced with the dilemma of where they fit into the NMO community. They are old enough to understand what the doctors are doing to them and why. It’s because of this reason that I was approached at the 2015 NMO Patient Day, to create a place where the teens and young adults can talk freely about their issues, and I have been moderating that group since then.

This year, for the 2016 NMO  Patient Day, I was approached about running a support group for the teens the afternoon before the conference, and truly I feel it made a difference. A group of around eight people were able to come together to talk about NMO. I wish it were under different circumstances that this amazing group of individuals got to meet, but we were able to come together and it was amazing. Some of the teens in attendance had never met another person with NMO before, let alone another teen. So, during a time when they feel sick instead of feeling alone they can fall back on that first meeting and how even if life is no longer in our control that we can find methods of coping, which we discussed in the meeting.

The largest issue all of my teens agree on is how they can or cannot maintain an active normal teenage life on top of trying to control their NMO and symptom management. Teens are emotional. They don’t necessarily have the life experience that adults have, and it can cause their emotions to get mixed up and they can easily become frustrated and angry. That is something I am proud of, of my support group members. They were there. They were aware. They wanted to ask questions and get answers. Having NMO is difficult enough without the added stress of friends, dating, driving, school, etc.

Something we discussed was relationships. With family, friends, and significant others. It came across that most of the teens in the group feel as though they are isolated and that no one understands them, and that nobody gets what it’s like to spend days, weeks, or even months in the hospital and it can get depressing. But, there is always that one friend, the one that brings you chocolate and chips and sneaks soda into the room.

I’m glad to say that bringing these amazing teens together has allowed them to create a bond they may not have otherwise. No longer are they fighting their battle alone. Together, standing tall, they speak out about NMO and fight to find a cure.

We have a few things being prepared for this group of amazing young individuals. Between the online support group I am working with the Guthy Jackson Charitable Foundation to put together a teleconference so the teens can have the opportunity to talk over the phone with one another about life’s events, NMO, and how they are or aren’t coping. It’s an amazing way to bring them together and start a dialogue that in recent years we didn’t have available for our younger NMO community members.

Blue Monday

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

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

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

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

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

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

Traveling with NMO

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

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

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

1. Stay hydrated.

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

2. Travel with meds.

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

3. Schedule plenty of rest time.

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

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

Safe travels this holiday season!

17
Dec 2015
POSTED BY Christine
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It’s The Little Things

To say that this summer is not going smoothly, would be an understatement. On June 25th, I got a call that no one ever wants to get: my husband had suffered a major heart attack at work. He was rushed first to a nearby hospital and then transferred by ambulance, with lights flashing and sirens screaming to our local trauma hospital for emergency surgery that would save his life.

Two weeks later, his complained of seeing “spider legs” in his left eye. An urgent appointment with an eye surgeon reveled his retina had torn and he had a sizeable hemorrhage, rendering him blind in the left eye. He underwent another emergency surgery, this time to save his eyesight right there in the office while I held his hand. Two weeks passed and the hemorrhage had not even begun to clear, so he had a second surgery on Friday to remove the blood so his eye can start to heal.

All of this has been traumatic and stressful on so many levels. Usually, I am able to take things in stride, but this was a heck of alot to deal with all at once, especially since I’ve had two rounds of IV steroids since the beginning of June and have not been feeling well myself.

On one particularly bad day, I called my best friend and had a bit of a meltdown. (I blame the steroids!) Sometimes it’s okay to not be okay and it’s a blessing to have someone in my life who really understands that. Later that day, I was tooling around online and came across a shirt that perfectly illustrated how I was feeling at that moment. My best friend saw it and ordered it for me, saying I had earned it.

This is it:

nope

 

I love it. Sometimes life is hard. Sometimes it runs you over. Sometimes you just have to take a break and say NOPE. It’s a good reminder that sometimes coping with the hard stuff means having moments like this and giving yourself permission to feel how you’re feeling. I am working on this. Meanwhile, I will wear this shirt and keep taking things one day at a time. It’s the little things that help me cope.

17
Aug 2015
POSTED BY Lelainia Lloyd
DISCUSSION 4 Comments
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NMO TV

We hope you’re all enjoying the warmer weather and if not, do what you need to stay cool and keep symptoms away. If you’re staying indoors, now is the time to take a look at Guthy-Jackson’s new NMO TV here:

 

http://www.guthyjacksonfoundation.org/nmo-tv/

 

Happy summer!

23
Jun 2015
POSTED BY Jenna
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Guide Dogs for the Blind: Should I get one?

In my latest Blind Life episode, I visit Guide Dogs for the Blind in San Rafael, California, where adorable puppies are born, raised, trained, and matched with visually impaired human partners. Erin, Jenna, Lelainia, and I all have canine companions, but all of ours are pets and not service dogs. I’m the one with the most impaired vision, and yes, I’ve considered getting a guide dog. This is why, when invited to the GDB to both visit and host an intimate, private dinner to help raise funds for the program, I jumped at the opportunity. I wanted to know, what’s it like to work with a guide dog?

Here are some things to consider when it comes to guide dogs:


  1. How often will I need the aid of a guide dog? That is, how often will I leave my home on my own? Guide dogs are energetic and eager to work, so your lifestyle and schedule should get you out of the house often. Use it or lose it, you know? Currently, I work mostly from home with the occasional sporadic travel. There are times, though, where I rarely leave the house during the week. When I was in grad school, I went to campus a few times a week, so having a guide dog then would’ve made more sense than it does now.
  2. Am I a dog person? This question might be a catch-22: you may not be a dog person, and then once you get a guide dog, you may become one. It’s a no-brainer if you love dogs, but even if you don’t, are you open to them? These guide dogs will be your companion until death do you part—are you ready for that sort of union? If you’re allergic to dog hair, I believe there’s a niche program out there providing hypoallergenic dogs. This population (blind individuals who want a guide dog but who are allergic) is so small, though, that it may be hard to get placed with a furry companion. You might have to consider alternatives (seeing eye bird anyone? Just kidding).
  3. Am I willing to put in the effort to be trained myself? I used to think getting a guide dog meant I applied for one, and then a cute, intelligent puppy would show up on my doorstep the next week. Wrong! We humans need to be trained, too. Your dog will not automatically know how to get to the Gap as soon as you get dropped off at the mall (unless, of course, you work at the Gap and have taught Fido the route from bus stop to storefront before). Guide Dogs for the Blind invite their new consumers to their campus in California to meet their new guide dogs and spend a couple of weeks doing “in-house” training. This means living short-term on campus with your dog, building trust between the two of you, and acquiring the skill set to work with the dog (I.e. How to care for her, how to teach him new routes, how to give positive reinforcement, etc.). You’ll have to take a short break from your daily life to come learn: are you willing to leave your family, work, and the comforts of your own home for a little while? Moreover, are you willing to put in the effort to become the best owner you can be? These dogs, their instructors, and their caregivers have put a lot of work into getting the pups ready for you. It’s your turn to uphold your end of the deal.

I’ve never had a guide dog myself, but maybe one day, I will. Guide dogs offer safety, protection, and companionship. Their intelligence and loyalty blow my mind: just take a look at this recent story about a guide dog putting itself in between its owner and a bus to protect her.

15
Jun 2015
POSTED BY Christine
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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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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.

nancy

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.

riley

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

Holiday Haze

Hmm…it seems I keep lucking out with the holiday posts.

Erin’s already posted about holiday baking. Lelainia already wrote a good post on how to stay healthy during the holidays. Sadly, these are the two main topics on my mind this week, as we’re hosting Christmas lunch for the family, and I just came down with a vicious cold.

Being sick sucks, but I’m the kind of person that always seeks the silver lining. And the silver lining of being unwell, in my opinion, is it’s a rare opportunity to put ME first. As a woman, and perhaps as an Asian-American, too, I’m constantly trying to make others happy. I work hard, often at the expense of my own health and happiness. It has been especially challenging since my success from MasterChef (everything’s a double-edged sword, right?), but I’m proud to say I’ve become better at managing life over the past year. Now, I know when to say no, and I value time above all else. I realize now that I cannot operate at high energy levels for weeks on end; in between projects and travel, I reserve a little bit of down time at home in order to recharge. So when I get sick, I know it’s life telling me to slow down and put myself first. It gives me a valid excuse to pause life and feel guiltless when I nap in bed at 2 PM, watch “Seinfeld,” sip strawberry banana smoothies from Smoothie King (or my own smoothies, and drift in and out of a Nyquil haze. (Yes, this is my modus operandi when I’m sick with the cold/flu.)

It also helps to have a little humor. I try to make it an annual tradition to watch Elf every Christmas, in addition to Love Actually (perhaps my favorite holiday movie), and A Charlie Brown Christmas (for nostalgia’s sake). Every year, I also bake my much requested Christmas cookies with cranberry, pistachio, and white chocolate (sorry, the recipe’s a secret!) and gingerbread cookies. I eat and exchange gifts with family. We make edible gifts for our friends—one year, it was strawberry cranberry jam, another year it was pumpkin nut bread, last year it was black garlic, and I won’t give away this year’s present yet since we haven’t distributed them. When I was in my teens, I attended Midnight Mass. Now I’ll go to service on Christmas Eve. We usually trim the tree (but I ran out of time and energy this year).

What holiday traditions do you, your family, and friends observe?

Happy holidays from us here at NMO Diaries. May you and yours stay healthy, eat well, and be merry.

22
Dec 2014
POSTED BY Christine
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