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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LA NMO Patient Day 2015

Arriving in LA, March 3rd, 2015.

Arriving in LA, March 3rd, 2015.

So I’ve just returned from my first NMO Patient Day in Los Angeles. I am still processing the experience- I think it will take a few weeks for everything to sink in. I was mulling over which parts I wanted to share with you because obviously, there’s alot that goes on at an event like this. I think I will go with the things that stuck out for me.

victoria

GJF founder Victoria Jackson welcoming everyone to NMO Patient Day.

First of all, the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies, Alexion, Chugai and MedImmune that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, we are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO.  More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/

The second thing that I noticed at Patient Day was the sense of community. It was heartwarming to see everyone looking out for everyone else in our time together. As a first time participant travelling solo to LA, I especially appreciated how everyone was welcoming and inclusive. The GJF staff were especially kind. The day after the conference, some participants had their flights cancelled due to inclement weather at their home destinations. I saw a post on the Facebook group saying that someone who was staying an extra day had a spare bed in her room if anyone was stranded and needed accommodation for the night. It’s that kind of generousity of spirit which really impressed me.

 

I had the chance to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program and as a Community Representative for the MS Society of Canada. While I wasn’t at my best, (I sustained a fractured rib the week before and was still in a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.

Manhattan Beach, LA

Manhattan Beach, LA

I also had the opportunity the day before and the day after to do a little sightseeing. On Tuesday I took a shuttle bus to Manhattan Beach, which was beautiful. White sands as far as the eye can see. Apparently when Waikiki, Hawaii was establishing itself as a tourist destination in the 1920’s and 30’s, they actually-get this-imported the white sands from Manhattan Beach to transform their rocky beaches! I had a great time wandering the little seaside village and just because I could, I had ice cream for lunch.

Selfie on the Hollywood Walk of Fame.

Selfie on the Hollywood Walk of Fame.

Thursday, I took the hotel shuttle to the airport and caught a shuttle bus to Hollywood to see the Walk of Fame. I had a good time wandering Hollywood Blvd. and seeing so many familiar names. I talked to all kinds of interesting people and even found a penny press machine. My son and I collect pressed pennies, so I was pleased to be able to add three more from this trip. I ended my day in Hollywood at my home away from home, Starbucks at Hollywood and Vine. I don’t usually do the touristy thing, but it was fun to visit somewhere I have seen on TV and in the movies for years.

Jenna & I being photo bombed by her makeup artist at the Makeover Party.

Jenna & I being photo bombed by her makeup artist at the Makeover Party.

I feel really fortunate to have been able to attend LA NMO Patient Day. It was an amazing experience and one I hope to be able to do again next year. I am also grateful for the new friends I made and the old friends I caught up with. Those connections are so incredibly important and I really believe together we are so much stronger. Thank you to Victoria Jackson, Bill Guthy and the GJF Foundation for hosting NMO Patient Day and for everything you do to fight for those living with NMO. Thank you for being all in.

09
Mar 2015
POSTED BY Lelainia Lloyd
DISCUSSION 2 Comments

Countdown to baby girl Miller

I am currently 38 weeks pregnant and the countdown has begun. I have been very lucky with my NMO with this pregnancy I have not had any problems with my NMO. It went into remission as soon as I got pregnant. Its amazing how your body can change so quickly from having horrible every day symptoms to your body acting like you never been diagnosed with the disease. It is a bitter sweet feeling telling myself “Oh this is what my body use to feel like.” It also makes me want to feel like this forever not having all that nerve pain and taking a ton pf pills everyday. Oh can’t forget doing Chemotherapy every 6 months that was nice vacation from that as well.

 

I am trying to enjoy my last few weeks being pregnant but as every woman who has been down this road knows. It is very exhausting and very uncomfortable at this point. Not to mention chasing after Allen every day and trying to get him to understand his baby sister is coming soon. I remember being pregnant with Allen was a piece of cake I could nap any time I wanted and just hang. Nope not this time Allen is making sure I stay busy! Eric has been a trooper the last few weeks, as he knows I just can’t keep up with everything.

 

I mostly have her nursery done there is just a few things I need to hang on the wall. My bag and her bag are packed for the hospital the car seat is ready to go. I have been staying home and just spending time with Allen, which has been nice. Since I know at any moment she can decide to come into this world. Plus I am terrified of my water breaking in public. Since that did happen when I was pregnant with Allen in the parking lot of Babiesrus, thank goodness it was outside cause that would have left a mess.

 

My doctor appointment yesterday went well she is doing well and everything is normal. I am having contractions but nothing constant. I have noticed they are stronger since this is my second time. I am still going to try to breast feed for 6 months instead of doing Rituxan right after labor. So I am crossing my fingers it will all work out. Of coarse all of my doctors will be watching me very closely making sure I will be ok. Stay tuned to see when she will make her entrance into this world.

04
Mar 2015
POSTED BY Erin
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A Remembrance of NMO Patient Days Past

Whenever it’s time for the annual NMO Patient Day sponsored by the Guthy Jackson Charitable Foundation, I like to reflect on Patient Days past. We’re always told in yoga class to be present, be in the moment, but sometimes a little reflection is good. It helps you see how much has been accomplished since, and it motivates you to keep moving forward.

I first met Erin and Jenna at the 2010 NMO Patient Day, and then NMO Diaries was born. The three of us gravitated towards each other because we were all around the same age and had come to NMO Patient Day with our husbands, and we knew each of them needed to share some caregiver bro humor at the end of a long day of NMO speak.

The six of us went to dinner at a nearby Italian restaurant, and my husband, John, ever the tech geek, joked that we should start a blog about the struggles of NMO. We kicked around some blog names, but even through the laughter, we knew we were on to something.

Now, more than four years later, we’ve welcomed Lelainia into the family, whom I haven’t had the fortune to meet in person. Lelainia and Jenna will be representing NMO Diaries at the 2015 NMO Patient Day next week on Wednesday, March 4th. I will sadly have just missed them by a day, as I’ll be in L.A. For work but leaving for another event in Michigan on the 3rd. And pregnant Erin will remain in Denver to get ready for Baby Miller.

The NMO family has grown vastly, thanks to the tireless work of the GJCF in bringing us all together. I have no doubt this year’s Patient Day will be filled with more relevant panel discussions and interesting seminars. And, of course, Patient Day will continue to instill a sense of belonging in all its attendees, fostering a community comprised of those who once were marginalized by this formerly orphaned disease.

I strongly encourage everyone living with NMO or affected by NMO to attend the NMO Patient Day, if not this year, then the next. In the meantime, you can watch/listen to my talk at the 2013 NMO Patient Day to get an idea of what this day is all about.

25
Feb 2015
POSTED BY Christine
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Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!