Currently Browsing: Neuromyelitis Optica (NMO)

caution: blind boarder

I don’t know what’s come over me. The older I get, the more daring I become. Or maybe the courage came with the vision loss, an illogical need to overly compensate to feel “normal”—“everything you can do, I can do too.”

Whatever the motivation, it has driven me to skydive two years ago and ski last year. My most recent adventure involves strapping both my feet to a board and skidding down an icy mountain. That’s right, I tried snowboarding last month. A bunch of friends decided to take a trip to Breckenridge again, and again, I called the BOEC to schedule boarding lessons. I was surprised to find that boarding came more naturally to me than skiing. I was less miserable this time and could even say I had fun. I was psyched to be able to go down the green and connect my turns a little from toe to heel by the second day. My teacher insisted that I was better than a lot of sighted beginning boarders. I think the key was the no fear factor—because I couldn’t see how steep a slope was or where the obstacles were, I just had to go with it and fully trust my instructor. I also think I had great instructors who, obviously, are highly trained. Thanks, BOEC, for helping people of all abilities enjoy the outdoors.

Here is a video John got of me snowboarding down the green with Wendy, my instructor. I’m slow as hell, but hey, I can say I carved on my very first trip! I hope this video inspires you—know that you can really do anything if you put your mind to it. Happy New Year, everyone!

elly and franky: pug b.f.f.

I haven’t been one for posting about food lately. After my first round of routine Rituxan last month, my vision deteriorated slightly. We decided to wait to see if it improves after the second round of Rituxan, but unfortunately, it remained the same: mildly worse than baseline. Dr. Greenberg, my neurologist in Dallas, decided to move forward with high-dosage steroids with the hopes that they will return my eyesight. We had to go with the oral route since it was right around Christmastime, and getting in to an outpatient clinic for IV steroids would prove to be difficult. (A side note: why does it seem like all my health problems arise during such inconvenient times like holidays and natural disasters? I know I’m not alone in this, too.)

Perhaps the oral steroids would work out better financially for us anyway since we haven’t renewed my Cobra insurance coverage, and we haven’t been able to enroll in John’s insurance through his new company. Regardless, I hadn’t been on such a high dosage of steroids in so long that I’d forgotten all the weary side effects that come along with them: extreme itchiness, hot flashes, taste distortion (constant metallic taste in dry mouth), increased appetite, general discomfort and bloatedness, constipation, restlessness, and insomnia. I hate all of it except for maybe the restlessness but only because it helps me turn into some extraordinary productive machine; I’ve been cleaning out the closet and tidying up the house and thinking about the novel like there was no next hour in the day. John took a forlorn picture of me yesterday at 11 PM. I was in my pajamas in the closet buried underneath boxes of shoes and bags of clothes trying to figure out what to donate and what to re-stack neatly on the shelves. He threatened to post the photo on Facebook if I didn’t take a sleeping pill right then and try to rest.

Needless to say, despite what you’d think with the increased appetite and energy, I haven’t been in the mood to cook or eat much. In fact, I’ve been kind of moody with what we NMO patients call “‘roid rage” lately. That’s why it’s important to remind ourselves of the fun and funny things in life. Like these two pugs who triple as best friends and guide/VI client. John sent me this post the other day, and we immediately thought of Jenna, my NMO Diaries sister who owns a pug of her own, Marmaduke.

Elly is a blind pug from Wales who relies on her pug friend, Franky, to guide her around town. How cute is that? And so I leave you with this lasting impression of 2011. Remember what extraordinary blessings we have in this world despite our circumstances. With the right group of friends and support, we can survive anything, and we can survive it with a smile.

fight that flu

It’s that time of the year again. You want to enjoy the chilly weather, the Noel season, the gatherings with loved ones, hot chocolate, eggnog, hot pot, turkeys and hams and pot roasts what have you. But what ends up happening is you’re lying in bed next to Death, shivering and sweaty and feverish and pissed. Why is it that the flu is so common during colder weather? My mama used to always warn me if I didn’t wear my jacket and gloves and thermals, I’d get sick. But I’ve heard that being cold is not the culprit—it’s the cold weather driving everyone closer together in a huddle which thereby spreads germs much more quickly and easily. Does anyone know if that’s true?

Either way, cold weather equates to more people coughing and sneezing and getting the flu. Earlier this year at the tail end of flu season, I wrote an article for Houston Press about which things we can ingest or imbibe to fight the flu. I thought it would be fitting to link to the article now that it’s season again.

Despite my compromised immune system from the Neuromyelitis Optica (NMO) and Rituxan treatments, my neurologist told me to get the flu shot this year, saying the benefits outweigh the risks. (I got mine at CVS for $30. You can get them at most pharmacies or at your doctor’s office. Most health insurance policies will cover the flu shot, too, so what’s there to lose?) Good thing because my husband has been sick twice this season already. I hope you can avoid the flu this year, but in the case that it catches you, read my post entitled ”What to Feed That Flu”, and you should be back on your feet in no time. Say “hi-yah!” Miss Piggy-style to that virus.

my go-to recipes for thanksgiving

Tomorrow is Thanksgiving already. Boy, has this year slipped past. I’ve been swamped with all of the usual end-of-year business such as holiday prepping and semester wrapping-up not to mention I’m in the middle of my Rituxan treatments which have got me all exhausted. Why doesIt seem like I only get beat down by this NMO during such inconvenient times like the holidays or when a hurricane is coming to town? But as with most things in life, you get all sorts of things thrown at you, and you just learn to take them in stride. I’ve been thinking about Joan Didion’s novel Play It As It Lays lately, how you just need to play the cards you’re dealt. Anyway, it’s Thanksgiving, and I still have lots to be thankful for.

I’ve already posted some of my favorite Thanksgiving recipes last year, so no need to waste cyberspace and repost. Instead, I’ll just link to them. Slap on your apron and get to cookin’! Happy Thanksgiving, and don’t forget what you’re grateful for.

2011 nmo patient day, here i come

Last year, I attended the 2010 NMO Patient Day hosted by the Guthy Jackson Charitable Foundation in L.A. This year, I was unsure if I could go, but things fell into place, and it looks like I’ll be coming once again. I’m thankful for these sorts of gatherings because not only does it give hope and knowledge by the spread of information, it builds community. NMO can often be a lonely disease, and (as ironic as it sounds) it’s wonderful to be in a room full of people who share the same battles. It was here that at this same time last year I met Erin and Jenna, and the birth of NMO Diaries commenced. I encourage those who have NMO or loves somebody who does to attend the 2011 NMO Patient Day to be held on November 9 at the Hilton Beverly Hills in L.A. Maybe I’ll see you there. And even if you can’t make it in person, you can view it from the comforts of your own home for the events are broadcasted over the web for full accessibility for those who cannot travel.

why go on an all-inclusive vacation?

Cabo San Lucas

Wish I could see this with my own eyes

Summertime means summer vacations. I recently went on a short vacation with my cousin and two girlfriends to Cabo, a beach town on the tip of the Baja Peninsula of Mexico. I hadn’t been to the Pacific side of Mexico since my teenage days when my family would drive down to San Felipe and camp for days on the beach. I discovered that the west coast of Mexico–like the west coast of the U.S.–has much more temperate evenings and chillier ocean water than the Atlantic side and its Gulf of Mexico where the waters are much warmer and more swimmable. No matter, because the Pacific has us beat in terms of appearance. The water was a bluish-green (or so I was told by my travel companions), and best of all, there are mini mountain formations next to the surf which, I guess, makes for a fantastic postcard picture.

While I admit sightseeing and taking in beautiful views are no longer a priority since I’d lost my vision, I decided to go on this vacation because I’d always wanted to visit Cabo, and there was too good a deal to pass up at the Riu Santa Fe. It was the first all-inclusive vacation package I’d ever been on (not counting cruises), and while ideally, I’d love to explore and immerse myself in the cityscape and culture, it is just no longer feasible without vision. So I (reluctantly at first) came on this trip but soon found that all-inclusive packages relieve a great deal of stress on the vacationer. Sure, you don’t get to really venture out on the town and try street food and come in closer contact with the locals, but what you get instead is minimal headache and less stress. Your meals are already taken care of–just grab a plate in one of the many buffets or make a reservation at a sit-down restaurant and just get up and leave when you’re done without settling the bill. The mini bar in your room is already paid for; drink all the water, soda, beer, and spirits you wish. There is something going on every night at the various on-site venues. You never have to leave the resort to do anything.

Of course, it would be a different matter if I could see, but this all-inclusive thing made vacation a lot easier. Every morning, we ate, went to the pool or the resort beach, ate lunch, then sunbathed some more, then showered before going to dinner. After dinner, we’d have a drink or two while hanging out at one of the bars or in the main courtyard where onstage there’s live music or shows. Then we go to bed, next day: repeat. This may not be my ideal vacation, but all-inclusive resort packages are good when you just need to get away for a weekend to relax. You never have to deal with price haggling, exchanging money, getting ripped off, or finding your way around. And thus, it makes for the perfect sojourn for the NMO patient or sight-impaired person. Less things to deal with means less stress, and that’s always a plus during vacation. We have enough stress as it is; what good would a vacation full of worries be? There are many sites that offer all-inclusive vacation packages for reasonable prices. Try some of the following:

featured, thanks to “masterpiece theatre” and fork for thought

Several months ago, a reader contacted me and asked to do an interview for a short piece she was writing about the cook who is visually impaired. I guess with a URL address as obvious as “theblindcook.com,” it was easy for them to stumble upon my page. The inspiration for the piece is rooted in the recent popularity of a Masterpiece Theatre show called “Downton Abbey” where the household’s cook begins losing her vision and has to deal with kitchen mishaps. I had forgotten about the article and interview until a friend recently brought my attention to it; she had found it while searching for my site. How funny is that?

I was also fortunate to have come across a fellow foodie blogger recently and was captivated by her descriptive and honest takes on local eateries. After contacting Ms. Fork to let her know she had another fan, she was generous enough to also write an entry about me.

3 girls with nmo conquer the disease and, inevitably, the world

When I first met Erin and Jenna and their husbands back at the first NMO Patient Day of 2010, we instantly clicked, and over dinner at an Italian eatery, the idea was born. It had started as a joke when my husband, John (who is a tech geek), mentioned that we should start a blog called the Three NMOs, a play off the “Three Amigos.” Well, the name may not have stuck but the blog idea sure did.

And so I introduce to you our NMO Diaries blog, an online space where the three of us ambitious and [relatively] young girls show how we try to live life to the fullest in spite of the Devic’s dianosis. It’s sort of a “I am NMO woman; hear me roar!” type of attitude, and we welcome your readership. The cool thing about it is it will contain a lot of videos (read: vlog) since Erin and Jenna prefer to leave the written word to me. The other cool thing is the name behind the Blind Cook is revealed. (Yikes! Enjoy.

caution: blind skier

John loves the snowy mountains while I love the sunny beaches, which is why for each of our respective bachelor/bachelorette trips, we headed to our desired destination: John to Breckenridge and me to Miami. Now that we’re married, we try to appreciate the other’s preference for the outdoors. This meant I had to bundle up and face my most dreaded enemy: the cold.

John fell in love with snowboarding after he went for the first time last year. Before his bachelor trip, he had never seen real snow in his life. Born and raised in Houston, the only kind of “snow” he’d seen was the southeast Texas kind: quick flurries that came about once a decade. But ever since he got a taste of the snow and mountains, he was hooked. And so this year, whether I liked it or not, he was going to plan a trip back to Colorado.

Never in my lifetime did I think I was going to attempt snow sports again. My first ski trip occurred over 15 years ago. I went for only one day with my family. After two runs down the bunny slopes, my uncle assured me I was ready for the green (intermediate) trails. What the hell was he thinking? It took me 2.5 hours to get down those greens. Meanwhile, my cousin lapped me three times on the slopes, a pro at the tender age of six. I ripped a hole in my pants with the ski pole and at one point, even skied straight into the yellow caution tape that roped off the edge of the cliff. It was a horrible experience, and I never wanted to do it again, let alone do it blind.

But that’s exactly what I attempted this time around. I decided it was something I should do not so much for my husband but for myself. I wanted to feel capable. It was something I had to prove to myself.

The Breckenridge Outdoor Educational Center (BOEC) is a neat non-profit facility whose mission is to adapt recreational activities so that all (including those with special needs) can enjoy the outdoors. The instructors from their adaptive ski school are certified to teach and guide those that are blind or paralyzed. Originally, I was going to sign up for snowboarding, but the BOEC advised that boarding was an activity better done if I had 3+ days to spend on the slopes. Because our trip contained only two full days on the slopes, the BOEC folks suggested I try skiing first, that I’d see more success with skiing in only 48 hours. And so I listened to their better judgment and opted for skiing instead despite the nightmare experience I had a decade and a half earlier.

The first half of the first day was spent feeling out what it was like to glide around with a ski on the bottom of my foot. First, I walked around on flat snow with a ski on my left foot only. Then just my right. Finally with both of them on my feet. Then I took the magic carpet/conveyor belt to the top of the bunny slope and practiced the wedge: the wider the wedge, the slower you go. Eventually, I learned to turn and make S’s in the snow. The afternoon was spent on the green trail at Breckenridge, and I actually made it down the entire green without falling! (See my skiing skills in the below video.) Granted I was going 1 mph, but still…I was so proud of myself.

I went against my teacher’s advice the next day and tried to ski Keystone instead of sticking to Breckenridge where, as John says, the greens at Key were like the blues(one level higher than greens) at Breck. The trails were steeper, and I ended up cutting my full day lessons in half to just a morning session because I was utterly exhausted. Not only is the sport already tremendously tiring–your legs are working muscles they don’t normally work–but for me who is a beginner and blind at that, skiing made my entire body tense because I was trying so hard not to fall. In addition to that, the fact that I can’t see to focus on any one spot made me get motion sickness on both the lift and at the bottom of the mountain; whenever I’d stopped, my brain and body still felt like I was moving. Needless to say, concentrating so hard on not falling and not upchucking all over my teacher were enough for me to throw in the towel by lunchtime.

I must say, though, that my instructor, Jeff, and his assisting intern, Brian, were awesome because I only fell twice in the 1.5 days I skied. They made my experience as awesome as it could be, considering I was a turtle on the slopes and had to wear a bright orange bib that said “BLIND SKIER.” At least I wasn’t tied to the end of a rope like a sled dog.

A bonus to the Colorado trip was the reunion I had with Erin and Jenna, the two wonderful young women I met at the NMO Patient Day. In the three months that we’ve known each other, we’ve grown incredibly close, communicating either by phone or email every week, sharing the goings-on in our lives, our day-to-day routines combined with our NMO struggles. It was great to see them again and know that we were all hitting the slopes to prove something to ourselves: that in spite of the obstacles, we indeed can do it!

The BOEC does more than skiing and boarding. During the summer, there are season-appropriate sports like whitewater rafting. Go here to learn more about the BOEC. And you also don’t have to go to Colorado to do adaptive skiing. There are schools all over the U.S. and Canada. Just google your destination along with “adaptive ski school,” and you should be able to find what you’re looking for. And remember, if the Blind can Do it, so can you.

dan’s story

In my previous post about Dan, I expressed my sadness whenI learned by a text message from his mother Reny that he had died. In lieu of flowers, the Tan family asked for donations to the Guthy Jackson Charitable Foundation in order to advance the research in NMO. Over $20,000 were donated (the largest donation the Foundation had ever received), and more than 400 people attended Dan’s funeral. What an amazing life story.

Before he was handicapped by NMO, Dan was a basketball athlete. On Sunday, the Ann Arbor news ran a story on the friendship between Dan and Darius, the point guard for Michigan. The story reminded me that great things can be born of tragedy, and I am grateful Dan’s memory not only lives on but has a positive impact on those who knew him and even those who didn’t.