The Blind Cook

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.

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?

• Watch the Awesome TED Talk.
• Get the Awesome book.
• See the blog that started it all.

Okay, so I was overly ambitious last week and claimed I would blog every day up until Christmas. I had the ideas all lined up in my head: holiday recipes, shopping suggestions, and so on. But then the days flew by, and I found myself busier and more tired than expected. Come Christmas Eve, I was wrapping gifts, making jam (which I had planned on bloggig about), and cleaning house. Then Christmas Day, I woke up early to start cooking, followed by four hours of my side of the family, followed by cleaning up, followed by three hours with the in-laws. By 11:00 PM on Christmas, I was ready to crash.

At 5:20 AM, I woke up with pain in my back. It wasn’t the usual neuropathic pain and banding feeling I often get in the middle of my back. Instead, it stemmed from my lower back and felt like my spine was crunching down upon each other. Then the pain radiated upward and to the right into my shoulder blade. I took a Vicodin anyway and went back to sleep. All of Sunday, I napped here and there and felt nauseous. Maybe it was the Vicodin. Maybe it was something else. I couldn’t stomach anything except for a Muscle Punch from Smoothie King for dinner, and I still threw that up a few hours later.

On Monday I felt better; I was hungry in the morning and was able to keep down the small meal I reheated in the microwave. Was it a stomach virus? A 24-hour bug? Exhaustion? Over the past ten years or so that I’ve had to deal with NMO and its various symptoms and conditions, I’ve noticed that my percentage of flare-ups increase during the holiday season. Why is that?

After I was first diagnosed,I read any literature I could find on autoimmune diseases. I discovered that autoimmune diseases, as with many diseases that inflict Americans, are linked to stress. While poorer countries fight famine and other basic illnesses, developed nations like America deal with stress and the whole spectrum of diseases that come alongside it. Even for the average healthy person, holidays can be a time of high stress. But for those of us with NMO who try to strive for independence and do all the “normal” things “normal” people do (e.g. cook lavish dinners, host lavish parties), stress takes on a whole new level and meaning. And for people like me who have a mild case of OCD, the stress level rises even more–everything has to be just like so.

Ever since the NMO Patient Day, I’ve been in regular contact with E and J; we bonded quickly because of our shared lifestyle (somehwat newly married) and disease (NMO). It was interesting to realize that despite our daily battles with NMO, all three of us hosted holiday gatherings in our homes. Perhaps playing hostess is something we’ve always loved to do even before we were diagnosed. Perhaps hosting the holidays helps us feel “normal.” Perhaps it’s a way to prove to others and ourselves that we can be “normal.” But is it worth the aftermath, the exhaustion, the vomiting?

Last week, the thought of falling behind on my blog kept nagging at me in the back of my head. If I take something on or give my word to something, I always make sure I follow through. So knowing that on Monday, I had said I was going to write a post every day, but by Thursday when I realized it wasn’t going to happen, I was mentally beating myself up inside. But then I told myself that the few regular readers I have out there will forgive me, especially if they knew I was trying to take care of my health, and I felt better. Then I knew I had to forgive myself, and I would feel much better. We are always hardest on ourselves, aren’t we? I need to break this senseless cycle of stress because it’s not doing anyone any good. So here’s to not keeping my word, here’s to not caring so much, not stressing out, not taking myself so seriously. Here’s to better health.

Many of us who live with NMO (and almost all other autoimmune diseases, for that matter) experience fatigue. Fatigue is one of those funny things to have: externally, nobody can tell you’re suffering from it but internally, you just can’t help feeling like a big sloth. Even my husband who loves me dearly (but who can’t possibly know what it feels like to be me) often says, “You’re always tired!”

Because NMO affects our neurological system, it is often frustrating to feel certain sensations (e.g. pain, tingliness, numbness, temperature changes) and have them not manifest on the outside of our bodies, a “proof” of some sort. Oftentimes, I feel like when I tell people how crappy I’m feeling, they look at me strangely and nod knowingly, pretending to sympathize but really not fully believing the extent of my complaints. After all, open bleeding wounds you can see. But not pins and needles poking you from the inside. For many of us A-type personalities, fatigue is especially a thorn in our side as we prefer to be on the go but this thing prevents us from doing so, and the self-critical devil on our shoulder taunts us, saying others will think we’re just being lazy, that we’re faking it. And thus is the complexity of fatigue.

As you can tell from my previous posts, I had quite a Thanksgiving. It was the first one in almost a decade that I’d cooked, with the help of my sous chef husband without whom I could not have pulled this off, a feast almost entirely from scratch (with the exception of the stuffing and corn). The food was insanely delicious–even with nearly 30 pounds of turkey, we had only three legs left over at the end of the night. Yes, our guests tore it up; many of them even said it was the best turkey they’d ever had. But despite the happy stomachs and good times, all the preparations and festivities left me exhausted. When asked if I planned on doing any Black Friday shopping, I could only look aghast: “Are you kidding me? Who has the energy?”

Apparently, everyone without NMO (and even some with NMO) does. The truth is everyone shops on Black Friday. It’s Christmas on steroids. It’s sad, really; this magical season turned consumerism. On Wednesday afternoon, John and I counted twelve people already waiting outside Best Buy for Black Friday. Folks, I said Wednesday afternoon. That means they were going to wait over 48 hours, through rain and cold, to save a few bucks. Okay, so I know the times are hard, but seriously…48 hours?!

Last night, I asked John if he remembered when this ridiculous tradition of Black Friday began.

“I don’t know. Maybe two or three years ago?”

No way, I said. Black Friday had to have been around since the ’90s. But neither one of us could determine when people started staying up all night to line up outside Wal-Marts, Best Buys, and outlet malls to flood the aisles at door’s open to grab and claw at discounted items. And where did the term “Black Friday” come from anyway?

According to this site on Black Friday history, the term was coined as early as the 1960s when accounting books were kept by hand, and stores were said to move from the red (indicating a loss) into the black (profit). Ever since the first Macy’s Thanksgiving Day parade in 1924, the Friday after Thanksgiving was the official kick-off to a bustling holiday shopping season. Then in the 1960s, the Philadelphia police dubbed the day after Turkey Day “Black Friday” when complaining about the traffic and pedestrian congestion on the streets.

I can’t recall a time when I actually stayed up all night or woke up extra early to make it to a door buster sale on Black Friday. And now that I’m blind, the chance of me doing so is even slimmer. I already loathe crowds to begin with, and when you have poor vision, the noisy herd of people pushing and poking at you is just not worth the stress when you can’t see well enough to be on guard. It is an over-stiumulation that easily exhausts me.

Which brings me to my topic of why Cyber Monday trumps Black Friday. Cyber Monday is indeed only a few years old. Started in 2005, Cyber Monday denotes the Monday after Black Friday when people have returned to their usual routine yet still itch with the shopping bug do most of their shopping online. Following in the suit of Black Friday, online stores (whether they have an actual brick and mortar store or not) deeply slash their prices in order to up their internet sales. And many stores like Best Buy, offer almost all of their Black Friday deals online. You can see if the item’s sold out at the click of a mouse, and you don’t have to wait in line. That’s exactly what we did the last two Black Fridays when we wanted those Samsung TVs.

Shopping online is the biggest convenience, especially for blind people. You don’t have to deal with crowds, you don’t have to figure out how to get to and from the store, you don’t have to wait in long checkout lines. You simply use JAWS or other screen readers to find what you want and click “Confirm Order.” And volia! You’re done. And you did it all in the comforts of your own home or office.

In pondering participation in the Advent Conspiracy, I didn’t plan to do a lot of shopping this year anyway. But when I woke up this morning with all these great deals in my email inbox (like the $10 off a $25 purchase and free shipping at Origins), I might have to do a little shopping after all. And the best thing is I would not have stayed up all night standing out in the cold waiting for these deals. And I then had the energy to pump out this post.