NMO

The first annual Dining for NMO Day is set for October 19th

Many of you know I love food. What you may not know is I lost my vision because of Neuromyelitis Optica, a rare autoimmune disease which currently has few effective treatments and no cure. I am doing my part to change this: the first annual Dining for NMO Day will take place on Monday, October 19th, and I am asking you to kindly support.
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Healthier living: An everyday resolution

Happy 2015!

As you might detect from last year’s post about getting fit, I don’t really believe in New Year’s resolutions; I’m of the mind one should set goals whenever one is ready instead of waiting for the calendar year to run out. But, I’m aware come January 1st, many people resolve to become new and improved versions of themselves, and I know many of these resolutions are something like, “I’m going to eat less sweets in 2015” or “I’m going to actually use my gym membership this year.” Essentially, the aim is often to achieve good health, so it’s only appropriate I blog about the topic of healthier living for my first post of 2015.

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Video footage from the GJCF 2013 NMO Patient Day

Back in November, I’d gone to the 2013 NMO Patient Day hosted by the Guthy Jackson Charitable Foundation in L.A. It was the fifth year for the gathering/reunion, and personally my third time attending. However, it was my first time attending post-“MasterChef.” This time, I was asked to close the day’s panels and workshops with a talk. By now, I’ve done a good number of these, but I still get a little nervous all the same. It helped to remember that everyone there is happy to see and hear from me, especially because they, too, either have NMO or loves someone with NMO. Keeping in mind that I had the room’s full support helped me face the crowd with a smile and less shaky knees. It also helped to hear Victoria Jackson call me her hero. *sniff*

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Guthy Jackson NMO Patient Day 2013 on Nov. 6

In the midst of my NMO journey, I found the Guthy Jackson Foundation and attended my first NMO Patient Day in 2010. That was where I met Erin and Jenna, my two NMO partners in crime, and we started NMO Diaries shortly thereafter, an empowering resource for those living with NMO.

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How to handle stress

It’s the beginning of November, and that means the holidays are right around the corner. And that means draining your bank account to buy unappreciated gifts for your significant other, your children, your great uncle, your neighbor, your coworker, your boss, your pets…Then there’s the long hours (days?) of holiday cooking only to result in a dry turkey that nobody touches. And then there’s the stress of feeling your gut oozing out over your waistline and then the dilemma of trying to finish that dry turkey yourself since you hate wasting food, which leads back to the muffin-top issues. Sigh. The insanity. The stress.
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Elly and Franky: Pug BFF

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.

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.

3 girls with NMO conquer the disease and, ostensibly, 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.

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.

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