NMO

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 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.

2011 nmo patient day, here i come

Last year, I attended 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.

a new year brings a new neurologist

After attending the Dallas symposium and the L.A. conference, I was convinced I needed a new neurologist. While I’d been with Dr. Brod since my NMO diagnosis in 2003, I never felt completely confident nor comfortable with him as my primary neurologist. He did manage to pull through with getting me the Rituxan therapy, but there had been numerous times when he was not readily available during one of my attacks. Instead of getting a hold of him (who knew my case best), I would be connected to one of his on-call colleagues who refused to prescribe me the necessary meds, mainly steroids over the phone because they were “not familiar with my case.” Instead, I would be told to proceed to my nearest ER to get the proper meds, and this would irritate me to no end because why should I have to wait in the ER and pay a hefty ER bill for something I already knew I needed? Also, all of the ER attendants I’ve dealt with in the past never knew exactly what NMO was, and they would take a very long time consulting other doctors or even the big medical handbook before coming back to tell me I needed steroids and I needed them quick. (Duh!) The other problem with Dr. Brod’s inaccessibility is that NMO exacerbations require a quick administering of treatment because symptoms worsen so severely in such a short amount of time. Within hours, a NMO patient could go from normal motor function or normal vision to paraplegia or complete blindness in one or both eyes. This gives more reason as to why NMO attacks need to be treated ASAP. And with all the difficult times I’ve experienced in trying to get the proper care through Dr. Brod or his associates, I finally decided to start seeking a neurologist elsewhere. I was tired of dictating my own healthcare; even though I’m an educated patient, I’m still the patient, and the fact that these doctors seemed so stingy with their medical advice, I just grew impatient and exhausted.

But enough about that. This is not at all a post about bashing particular neurologists–that is not at all my intention. It is more like an editorial review of my care in the past versus my present (and hopefully future) care.

I first met Dr. Benjamin Greenberg at the Dallas symposium where he was the hosting physician. I had expressed at the time that I was not 100% happy with my current care team, and so he suggested I try coming to his NMO clinic for a second opinion. And that is exactly what I did on January 6th.

John and I drove up to Dallas Wednesday evening for my appointment with Dr. Greenberg Thursday afternoon. I came prepared with a list of questions and concerns (which is key to having a successful doctor’s appointment–I’ll blog about how to manage your care team soon) and spent about 90 minutes with Dr. G. He thoroughly addressed all my issues, and I could tell by our discussion that he had indeed gone over my medical records and MRI films. I liked that he did his “homework” and was familiar with my medical history. My vision loss, he said, seems to be the main manifestation of the disease, and he attributed this to two reasons: (1) there is damaged myelin around the optic nerve fibers, and (2) there is damage to the actual optic nerve “wires.” The former, he said, would be easier to repair; the latter, not so much. There are, however, two studies currently happening. The first is getting the patient’s myelin to reproduce within the patient’s own body. The second is to inject stem cells into the back of the patient’s eyes and cultivate them to regrow optic nerve fibers and myelin. As for the timeline, I have no idea. Dr. G did reassure me that we are closer to figuring out NMO than MS, which is utterly ironic considering MS has so much more funding and awareness than NMO.

We also discussed my ongoing Rituximab treatment. Currently, I was only being reinfused once my B-cell count reached above 2% (normal range for a healthy human being between 2% and 10%). With this measurement, I’d been able to avoid reinfusion for an average of at least 12 months. Dr. G, however, has a protocol of reinfusing his patients every six months regardless of the B-cell count. When I expressed my desire to prolong the Rituxan as long as possible (who wants to get chemo when they don’t feel they have to?), he said it’s ultimately up to me, but then monthly B-cell and CBC monitoring becomes crucial. He also mentioned that there seems to be cases in which patients who wait for some B-cells to build back up in their system before killing them off again with Rituxan develop a resistance to the Rituxan. This is rare, he affirmed, but it has happened, so why allow the possibility of resistance? Why not keep the B-cells from ever coming back? Why not continue Rituxan infusions going every six months before any B-cells return? Hmm…interesting point he makes here. Now I’ll have to think more about this matter.

Dr. G also said there seems to be a trend in patients when the B-cell count reaches 1-2%, there is only a two-week window after that when the patient’s B-cell count will skyrocket to 7% or higher, placing the patient at high risk for an attack. This means getting the proper immunosuppressive meds within those two weeks is also crucial, so he prefers to keep the patient’s B-cells at bay with more regular infusions.

I told Dr. G I was concerned with how long I could remain on the Rituxan, explaining that I’d read how patients were sometimes taken off the Rituxan after five years. Dr. G said as far as he knew, as long as the patient was responding well to the Rituxan (i.e. the drug was keeping attacks at a minimum), he saw no need to move on to a different treatment. He admitted that he did not know the long-term effects of Rituxan on NMO since it was mostly used for cancer. He mentioned that he does know someone who has used it for NMO for nine years.

After we talked some more about drugs and treatments for the acute symptoms I experience most frequently–including neuropathic pain, sphincter dysinergia (when it’s hard to get the urinary flow started or if the flow tends to stop mid-stream), a low libido, insomnia, and fatigue–I asked if he could recommend me a local neurologist in Houston with whom he could work together with for my care. He referred me to Dr. George Hutton of Baylor, saying he was a neurologist he fully trusts. He is also going to recommend me a PCP as John and I have been in search of one ever since we moved to our new home in a different part of town.

After discussing the “serious” stuff, we shot the sh*t a little bit. Dr. G asked both John and me what we do.

“Aren’t you a chef or something?” Dr. G said.

Surprised, I had to laugh. “No, I’m in grad school for writing,” I said, tickled that somehow, the existence of this website must’ve traveled through the NMO grapevine to the doctor’s ears.

Overall, I felt my visit was pleasant and thorough. It was worth the trek to and from Dallas. Of course, if you ask John if it was worth it, you may get a different answer. But in return, I am rewarding him with one free round of golf.

thoughts on d’s passing

After I was officially diagnosed with NMO in 2003, I went online in search of any information I could find about Devic’s. As it was such a rare disease, the search results were minimal. But I did find an online support group. This was where I met R whose son, D, had NMO. Throughout the years, during my most difficult attacks, R had been a constant support via emails and phone conversations. She gave me hope when life looked dim, lending her positivity to not only myself but others in our NMO family. She did this all the while with her own son’s health deteriorating to the point where he had become quadriplegic and blind.

It is with great sorrow that I received the news from R that D passed away Wednesday evening at 6:45 PST. And while I can only share a fraction of the family’s grief, I also share in their relief in knowing that D is no longer suffering and has gone Home. At the end of his days, D was not only having trouble swallowing, talking, and breathing, he also experienced mental loss and dementia. He was unhappy and fearful, as any of us in his position would be. In the words of his mother, he had endured too much for too long. And so it is with his passing that his family may move on to a new chapter in life.

This doesn’t mean there will be an absence of grief. I was feeling blue after I’d heard the news on Wednesday. John, in trying to cheer the both of us up, played this TED Talk by Neil Pasricha on the 3 A’s of “awesome.” It was humorous, touching, and inspiring. TED Talks are sponsored by a non-profit organization (TED) dedicated to “ideas worth spreading.” I invite you to watch the TED Talk and find out how to live more awesomely. And who can’t use just a little more awesomeness in life?

May you rest in peace, DT.

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