Ski/Snowboard Season 2014-15

If you follow me on Facebook, Twitter, or Instagram, you would’ve known I was in Breckenridge, Colorado, this past weekend to work on my snowboarding skills. And yes, the blind can snowboard.

I didn’t get a chance to visit Erin in Denver, but I knew we’d be rushing in and out of town, and Erin had been going through her own challenges with pregnancy #2 so I didn’t want her to exert herself too much.

My husband, John, picked up snowboarding after he went on his first trip for his bachelor party five years ago. He was subsequently bitten by the boarding bug, and I’d since gifted him a nice board, and he goes at least once a season. Because I don’t believe in limiting myself with my disabilities, I decided to try my own hand (feet?) at snowboarding, if only to have a common enjoyable pastime with the hubs.

My friends had told me they’d seen vision impaired skiers and boarders on the slopes, so after a little online research, I found the Breckenridge Outdoor Education Center, a wonderful facility providing highly trained guides and instructors in all forms of outdoor recreation from rafting to—you got it—skiing/snowboarding. When I first called the BOEC during the 2010-11 season, they had suggested I try skiing with the reason being skiing is often easier to learn than snowboarding. Skiing, however, turned out to be disastrous for me (I blogged about my skiing experience with the BOEC), and I figured out later the reason I’d gotten so much motion sickness was because on skis, you’re elevated so much higher off the ground; I could not feel the earth beneath my feet and thus felt disoriented like I was hurling through space with no idea of where was up and which way was down. With snowboarding, your feet are closer to the snow, and so I felt much more grounded and thereby less nauseous.

IMG_2241.JPG

This past weekend was my third time snowboarding in four seasons (I had to skip last season due to scheduling conflicts), and I’m happy to say I did not regress in skill. I am able to board down the easy green run at Breckenridge’s Peak 9 (I think it’s the Silverthorne run, for those of you who are familiar with Breck) with one- to two-handed assistance and verbal cues (as pictured above—I’m on the right and Jodi, my guide instructor is on the left). They say next time, I’ll be ready to advance up to the blues and work on completely independent boarding—woohoo! That’s my goal: to board independently down greens and easy blues with verbal cues within two more seasons.

While so many people applaud my courage (and yes, I admit it takes a certain amount of guts to strap yourself on to a board atop a snowy mountain without vision), I must attribute a majority of my success to the folks at the BOEC. They are trained to assist people of all abilities (I.e. Those with Neuromyelitis Optica/NMO, Multiple Sclerosis/MS, vision loss, paraplegia, quadriplegia, etc.) so that all may enjoy outdoor sports and beautiful Colorado. And if you’re headed to other ski destinations outside of Breckenridge, be sure to look into their respective outdoor education centers. There’s nothing like that feeling of accomplishment to boost your self-esteem and confidence. If I can do it, you can too. Stay warm, be safe, play hard.

27
Jan 2015
POSTED BY Christine
DISCUSSION No Comments
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Erin’s pregnancy update

I wanted to give everyone an update on how my pregnancy is going. The last 3 months have been challenging I have been really sick with a bad sinus infection, ear infection and bronchitis. I have been seeing up to 3 doctors a week trying to get me better but between being pregnant and having NMO I just can’t win. I am now on my fifth round of antibiotics and three different inhalers I am hoping this will do the trick. Eric has even been blessed with me not having a voice for over a week now. Other then that baby girl Miller is doing well she is over three pounds and is always moving around in my tummy. I am currently 32 weeks which is almost 7 ½ months and I have been really blessed and I have not been having any issues with my NMO I am still getting my CD 19 count checked every month by my neurologist. I got the green light this month to try to breast feed this time as long as a do some pulse steroids, I am very excited about this since with Allen I could not since I did Rituxan three hours after having him. I am hoping this time with breastfeeding I will not flare at all after having her.

These last 2 months are going to busy around here we will be moving Allen out of his room and into what use to be our office. He is joining the big kids club and getting bunk beds, He wants his room to be decorated in cars and planes. I am trying to complete this project in the next few weeks so he can get adjusted to being in a new room. I also need to start decorating Allen’s old room for baby girl and getting everything ready for her. This last weekend we went through our storage unit and pulled out all the baby stuff and the bassinett. I am defiantly in nesting mode and trying to get everything ready cause I know she will be here before I know it. I am trying not to drive Eric crazy with all the things that need to get done cause I feel like we are under the gun and I just want to have as much done as possible before she is born. As we all know your life is pretty hectic after having a baby not to mention having a three old adjust to having a baby sister now.

Disney World at Christmas

There’s something about seeing the castle that made me giddy, a reaction I wasn’t expecting. We never went to Disney World growing up – it just wasn’t something we could afford so I really had no expectation and no real understanding of what I missed as a child. When Sophie was still in the womb I used to talk about all the things I’d want her to experience. Disney was one of them. This year our work schedules aligned and we were able to get away at Christmas, something neither of us had done before. Sure, our family was a little peeved that we went away but for one year it was totally worth it.

Christmas at Disney is, well, magical. Even with 80,000 people it’s a special place. We had planned to take Sophie when she was older and I definitely still will do that but at 2.5 yrs old, she was overcome with joy. With reactions like this:

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And this:

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It was the best Christmas of my life. Seeing her reaction to her heroes, the castle, the parades and the rides will hold memories for a lifetime and then some.

Navigating through a large crowd, standing in long lines and walking all day does take its toll especially for someone with NMO (Neuromyelitis Optica). We stayed at a property close by and rented a car. We started early, took a break mid afternoon for a nap back at the condo then headed back for dinner and the evening parade or shows. On one of the days I asked for a Disability Access Card, which provides a return time on an attraction instead of waiting in lines. I found that extremely helpful because after our first day I secretly struggled with excruciating back pain where my lesions caused a flare up and swelling. If you ever have an opportunity to visit Disney but especially at Christmas, I highly recommend it. Here’s a few more pictures of our trip.

 

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CIRCLES Study, Canada

circles

So after the sorting out of a considerable amount of red tape, Canadians are finally able to participate in the NMO CIRCLES* Study in Canada!

Just before Christmas, I went out to UBC to meet with Katrina, who is the study supervisor so I could enrol. She arrived at our appointment with a binder that was about 3 inches thick, but she was quick to reassure me that there were huge sections of the paperwork we’d be able to skip over because a good portion of the information needed would be mined directly from my medical records. (I don’t envy the person who has to spend 2 weeks chasing down all those details!)

vials

Katrina asked me a ton of questions about my medical and geographical history. Some of the questions were really interesting and some of them were just plain weird-one reminded me of those dreaded math word problems I hated as a kid. (Katrina assured me that they are removing that particular question from future versions of the study.) Once all the information was gathered, she walked me over to the lab where they drew 9 vials of blood. This is about 4 tablespoons or 58.5 ml, which less than you would donate to a typical blood drive and it didn’t hurt at all. (My lab tech was excellent!) From there, the blood they collected would be broken down into 40 individual containers. All blood samples are labelled with a unique code-identifying information like my name or personal health number are not included. The blood samples are shipped immediately to the biorepository lab in the eastern United States were they remain until researchers working with the Guthy-Jackson Foundation apply for samples to work with.

blood draw

All in all, it took about 3 ½ hours for the entire process. Follow up appointments for the study will be shorter, as there should be less paperwork. While I was having my blood drawn, I learned that I am the first Canadian to have blood drawn for the CIRCLES Study in Canada! Cool!

I signed up for this study because this disease can leave us feeling pretty powerless. I think that one way we can counteract that feeling is by helping to further research, through our blood and medical information. It requires a bit of a time commitment, but I am making a conscious choice to take time out to help researchers learn more about NMO so they can search for a cure in the hope that someday none of us will have to endure losing our vision or mobility or to be fighting for our lives.

Currently, UBC is the only site in Canada enrolling NMO patients for the CIRCLES Study. If you are interested in participating in this study or would like more information, you can get in touch with Katrina McMullen at katrina.mcmullen@ubc.ca or call 778-320-5038.

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies

05
Jan 2015
POSTED BY Lelainia Lloyd
POSTED IN

NMO

DISCUSSION 4 Comments
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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
DISCUSSION No Comments
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What to tell our children about NMO?

Despite this blog, I’m a very private person. I go about my day without anyone really knowing the pain I’m in. I rarely (closer to never) complain and most of my family and friends forget that I suffer from Neuromyelitis Optica (NMO). But truthfully, some days aren’t good. On my “bad days” I tend to go into hiding, I work from home, I sadly cancel on social outings. I’m okay with that now. My husband is the closest who gets it (as best as any non-patient could), watching me in quiet agony sometimes and I’m sure overhearing my private pep talks to push through the day. And now my daughter is also privy to my suffering.

So how much do I tell her?

My daughter is 2 and a half now. As a mother I’ll do anything to protect her from the realities of this world. I don’t want her to know pain, sadness, disappointment for as long as I can. She’s growing up so fast and I’m often disgusted how quickly our world wants our children to mature. Don’t get me wrong – I don’t want to raise an ignorant, immature brat, but I do want her to enjoy being a princess, blowing bubbles in her milk and laughing at funny faces we make because she (and every child) deserves that.

On my bad days she’s seen me struggle a little bit. On those days I know a look she has on her face, that is a mix of understanding I’m not my usual energetic self with a lot of worry that something isn’t just right. It’s that look that breaks my heart. It makes me worry about that inevitable day, the one when another major attack happens, because it will, and we’ll have to figure out a way to explain it. I’m not pessimistic but a realist who thinks we should be as best prepared as we can be.

I don’t know if this is the right answer (like all parenting conundrums) but when she’s old enough or when I’m forced to find a way to explain it, I will tell her my harsh reality. And that’s ok because I want her to understand that sometimes bad things happen to good people and strong people can have weaknesses. What I have resolved so far is this – NMO will be my battle, not hers. I hope for a cure one day but if things become more challenging as we both age I’ll want her to go and live her life  and not become my caregiver. I hope I raise her well that she’ll want to be but of course, I won’t let her. I know I’ll potentially get some grief about this; there are a lot of families that believe one should take care of their elderly, and yes, there’s a certain sweetness and sense of responsibility I respect about that value. But I hope for my daughter to be braver than me, stronger, smarter, healthier than me and I want her to take that and be impactful to our world, not just impactful to me. 

16
Dec 2014
POSTED BY Jenna
POSTED IN

Family, NMO, Uncategorized

DISCUSSION 1 Comment

Holiday Baking goodies

Tis the season of baking holiday goodies. I would like to share some of my favorite recipes to bake goodies for family and friends. This year I am trying to bake as much as I can but I might be limited since I am getting to the point in my pregnancy standing on my feet starts to hurt after awhile. Anymore I get a lot of my recipes off the internet for one its quicker and easier. Second I already have a ton of cookbooks and do not need to buy anymore.  I am excited this year to decorate cookies with Allen I think he will have a blast! I am sure he will eat so much frosting it will upset his stomach but at least he will have fun. Happy baking!

Chocolate Chip Cookies

http://allrecipes.com/Recipe/Moms-Chocolate-Chip-Cookies/Detail.aspx?event8=1&prop24=SR_Title&e11=chocolate%20chip%20cookie&e8=Quick%20Search&event10=1&e7=Home%20Page&soid=sr_results_p1i4

 

Oreo Balls

http://allrecipes.com/Recipe/Oreo-Balls/Detail.aspx?event8=1&prop24=SR_Title&e11=oreo%20balls&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i1

 

Roll out sugar cookie dough

http://allrecipes.com/Recipe/The-Best-Rolled-Sugar-Cookies/Detail.aspx?event8=1&prop24=SR_Title&e11=roll%20out%20sugar%20cookie%20dough&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i12

Frosting for Sugar Cookies

http://allrecipes.com/Recipe/Sugar-Cookie-Icing/Detail.aspx?event8=1&prop24=SR_Thumb&e11=sugar%20cookie&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i4

 

Molasses Cookies

http://allrecipes.com/Recipe/Molasses-Sugar-Cookies/Detail.aspx?event8=1&prop24=SR_Title&e11=molasses%20cookies&e8=Quick%20Search&event10=1&e7=Recipe%20Search%20Results&soid=sr_results_p1i1

 

No Bake Peanut Butter Cookies

http://allrecipes.com/Recipe/No-Bake-Peanut-Butter-Cookies-III/Detail.aspx?event8=1&prop24=SR_Title&e11=no%20bake%20peanut%20butter%20oatmeal%20cookies&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i16

 

 

09
Dec 2014
POSTED BY Erin
POSTED IN

Uncategorized

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Be Well!

Jan10 (C)How has a month flown by so quickly? December already! *boggles*

So I thought this month, I would share some of strategies for staying well during the holiday/cold flu season. This is not medical advice, but rather just tips and tricks I use to avoid coming down with whatever’s going around and to manage fatigue.

Tips on Avoiding Germs:

1. This is probably the most important and involves common sense: I tell friends and family that as long as they are not sick (ie: coughing, sneezing, running a fever) they are welcome in my home. I tend to have to remind people fairly often, but when I do, I do it as nicely as possible. When you are a generally healthy person, you enjoy a different level of awareness about these sorts of things, so it’s easy to forget that it puts someone you love with NMO at risk.

2. When guests leave my house, I remove all the hand towels in my bathroom and put them in the hamper to be washed.  I have been doing this for years. It just made sense to me that if germs are going to come into the house, that’s one way to keep them to a minimum.

3. I have several pairs of those cheap stretchy winter gloves-the ones you can buy at the dollar store. When I have to travel on transit in the winter, which is the height of cold and flu season, I put a pair on. That way I can hang onto the poles getting on and off the busses and Skytrain and hold handrails or push elevator buttons in the stations and I am not exposing myself to any germs. When I get home, I throw the gloves in the wash and put a clean pair in my bag for next time.

4. I try to avoid having to go to the doctor’s office or the hospital over the winter when everyone is hacking and sneezing but if I absolutely must go, then when I get home, I throw all the clothes I wore into the wash and have a shower.

5. Wash your hands, wash your hands, wash your hands!! Sometimes I don’t have access to a washroom, so I carry a packet of antibacterial wet wipes in my bag. I’m not a fan of that hand sanitizer stuff,  so wet wipes are a better option for me.

 

 

Managing Holiday Fatigue:

1. I try to avoid over booking myself. If I have too many activities, not only am I not going to enjoy them, but I will be stressed and tired and probably not much fun to be around. Less is always more.

2. Naps are your friend! Leave some room in your daily activities to have a lie down. Even 10 minutes can help me feel more human, but usually I like to have at least a ½ hour. I don’t necessarily need to sleep, but I do need to stretch out and have some quiet time. This act of self care is super important to my daily routine.

3. Eat well. It’s such a temptation to load up on treats over the holidays, but too much fat and sugar can be an energy drain. Your body needs healthy food more than ever during this busy time of year. Don’t deny yourself the treats, but enjoy them in moderation and aim to get fruits and veggies on your plate too. Your body will thank you for it. I find when I eat poorly, I feel poorly and for me, that’s reason enough to be more thoughtful about my food choices.

4. Delegate! This is one time of year where there are so many services to help make preparing for the holidays easier.  Take advantage of things like:

 

-Pre-made holiday food trays-lots of grocery stores even allow you to pre-order and customize these.

-Store staff offering to help you to your car-let someone else do the heavy lifting!

-Shopping online-I LOVE this because I hate the malls at the best of times! Online shopping means no parking hassles, no schlepping from store to store in a ho
t coat, no standing in line and no lugging packages to the car. Many online businesses also offer free shipping.

-Gift Wrapping services-so many charities have booths in local malls and for a donation, they will wrap your gifts for you while you wait. It’s win-win and if you come home with your gifts wrapped, no one can peek!

-Potluck-If you’re hosting a get together or a meal, ask everyone to bring a small dish to share. It’s perfectly acceptable to do this at this time of year and it will take some of the pressure off you having to shop for and prepare everything.

 

If you have any tips, I’d love if you’d share them in the comments! I want to wish you all a wonderful holiday season, however you celebrate and much health and happiness in 2015.

02
Dec 2014
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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Thanksgiving and a Little Personal NMO History

Thanksgiving is my favorite holiday, though I often greet it with a bittersweet sentimentality. I love the quality time with friends and family, the cooler weather, the sound of football on TV, the unpretentiousness and ease (read: no gifts like during Christmas), and especially the FOOD.

But many Thanksgivings ago, for a number of them in a row, I would get Neuromyelitis Optica/NMO attacks. Perhaps it was the holiday stress, the sometimes frigid climate, or the flu season. Perhaps it was merely coincidental. Whatever the reason or reasons, it was almost no fail for four years in a row that I had with my Thanksgiving turkey either a side of optic neuritis or transverse myelitis.

And isn’t it Murphy’s Law that my attacks would come during the holidays (or once, during a hurricane) when hospital and pharmacy staff were skeletal at best? My neurologist at the time not only had cold bedside manners, but also frequently left me to dictate my own healthcare. So many times I’d have to leave multiple messages with his office saying, “Okay, my vision is getting worse. I really need the dexamethasone stat, please.”

The turning point for me came in 2007 with my visit to Dr. Dean Wingerchuck at the Mayo Clinic in Arizona. He wrote a letter to my primary neurologist recommending Rituximab infusion therapy, and after a lot of back-and-forth with insurance and Genentech (the maker of Rituxan) and a botched first infusion, I’m happy to say I’ve been attack-free for 7 years.

And that, my friends, is something to be thankful about.

My message is one of hope. I know what it’s like to be misdiagnosed and given ineffective treatments. Keep searching, and have faith you will find it. You will find the right doctor and the right treatment, and you will lead a full and fulfilling life. Take it from me.

Depending on how you look at it, my life philosophy can be viewed as either optimistic or pessimistic: I always tell myself the situation could be worse. Maybe it’s a defense mechanism, but it’s kept me sane. No matter what, life could always be worse. This is how I find the small things for which I’m thankful.

Last but not least, it wouldn’t be Thanksgiving if I didn’t talk about the food. Here are a few of my tried and true holiday recipes; try your hand at one or all. Happy Thanksgiving to all of you from us at NMO Diaries.

*These recipes are from my Blind Cook blog. More recipes can be found in my cookbook, Recipes from My Home Kitchen.

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25
Nov 2014
POSTED BY Christine
DISCUSSION 7 Comments
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Should NMO patients get the flu shot?

Getting the flu shot is a personal choice. What do I mean by that? As a neuromyeltis optica (NMO) patient I’ve never received a concrete answer as to whether the merits of said flu shot outweigh any potential risks. So that’s what makes it a personal choice; that it is completely up to me to take what little information is available and make a somewhat educated decision. Let me take a step back…

I trust my team of doctors. Since my first attack I’ve always been treated with respect, have had the opportunity to voice my concerns and have always received honest answers. And I’m grateful because I know some patients don’t share my opinion about their healthcare, some even sharing the same team of doctors. Every year I have this discussion and every year there’s still not enough evidence. My neurologist is unsure how my symptoms will react, my general physician sees no harm and my rheumatologist strongly disagrees with the shot for those with compromised immune systems. They all make strong arguments and again, I emphasize, I trust them. I also respect them so much more for just being honest and saying, ‘collectively, we don’t know what the answer is for sure’.

So every year I choose not to get the flu shot. Truthfully, I’m tired of all the drugs in my system so one less excites me.  And I hate needles so if I can avoid one I typically do. But last year my daughter, then a year and a half, came home sick from daycare so often I coined the phrase, “sick diet”, which I attribute to my post-baby weight loss. This year started no different. As soon as the leaves started to change my daughter came home with a cold and I in turn caught it, which became a week long body shutdown. Not wanting to be sick for most of the winter again this year, I opted to try the flu shot finally. On a routine check up with my general physician he suggested the flu shot, which was available right then if I wanted it. It was 8am on a Monday morning prior to a hectic week of work. Sure, some patients feel a little unwell but we guessed the worse I’d feel is a sore arm at the injection site. I have after all, been taking good care of myself, working out regularly, eating and sleeping. As the fluid entered my arm I instantly felt unwell. I started to sweat, developed a headache and my body ached. And the NMO burning…the burning…And just as the nurse put the bandaid on the nausea hit me like the worst stomach bug I’ve ever had. Thankfully a waste bucket was in the room and my modest breakfast found itself in it. Thinking I could just push through my day I headed to my office but within the hour it was evident I had the full blown flu. It took me another week to recover from that teeny, tiny needle. 

I want to put out my disclaimer here: this experience is by no means my opinion that NMO patients shouldn’t get the flu shot. I also want to make it clear that the reaction I had could also have happened to any other person who doesn’t have NMO. I’ve had one bad experience with the flu shot and that’s not enough evidence to determine a pro or against stance. 

If you’re like me and unsure about the flu shot don’t wait until mid season before you make a decision. If you decide against it, encourage your family members close to you to get theirs. Also, I want to reiterate that every NMO patient is different so always consult with your team of doctors.