Balance of Superpowers

Yesterday, my MS flared up out of nowhere.  That’s how I saw it, anyway, when out of the blue my legs just sank from beneath me. What an insult! I kept saying,”This is so surprising.”

My husband was unflappable. Finally he said, “This is not a surprise. You have MS.”

You would think, twenty three years after the diagnosis,  I wouldn’t need to be told I have multiple sclerosis. But it does still surprise me. I haven’t had my legs drop out from beneath me in months. I’d kind of hoped maybe that symptom would remain in the past.

While I depend utterly on my husband’s acceptance of my MS, I depend equally on my own stubborn denial to ensure I live my fullest life. Denial may be my greatest superpower. Acceptance may be his.

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Relief

 

Happy note in my in-box this morning.

Lisa:
Please disregard that letter. It was denied because the lady I was speaking to marked to wrong answer-
So I spoke with a Dr. And and got it overturned. Your are approved and will be receiving another letter. Please let me know if you have anymore questions.

Thanks

K-

 

I opened this note from my physician’s assistant in the midst of a thirty minute phone ordeal with Humana; I’d tried talking to two operators with Kentucky accents and neither one  could find my account, even when I spelled my name with the military Alpha Bravo Chalie method.

I’d gone into this day prepared to be loving. Literally. I was carrying this quote around from activist Ruby Sales,  who said, “I love everybody in my heart. And you can’t make me hate you.” I was going to remind myself, no matter what happened, that Humana might be an evil corporation, but the people making up Humana are basically good. Oh well. That’s a nice thought.

And what was my take-away after the botched claim processing and  the phone ordeal?  Humana, I no longer think you are evil. You did, after all, approve my claim and I can continue taking Zinbryta. But from now on, I’m skipping talking to your basically good people and going straight to your website.

I am not yet an evolved human being who can withstand uncertainty…or being on hold.

Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

Six Months

Note from the Rat: Reading over this 2012 blog post from my vantage point in 2016, I am so grateful to the NIH (National Institutes of Health), which has continued to supply me with the MS medication I have depended on to keep my Multiple Sclerosis in remission. This medication, which I refer to as  DAC HYP, will (hopefully) go to market with the name Zinbryta. In these intervening years since I wrote this post, all that was asked of me was that I have my liver functions checked locally every six months, and that I fly down to the NIH every six months to have more extensive testing; more bloodwork, a lumbar puncture, eye exams, typical neurologic exams, MRI’s. The length of time it is taking to get the drug approved has been very frustrating to me, as I know more and more people who have been diagnosed with MS who have no access to the medication that has worked so well for me (one brain lesion in ten years, vs many tens of lesions in the ten years previous.) My very dearest friend with MS, Debra C.,  died while waiting for access to this drug. The only comfort I can take from this long wait is that I, and the privileged few on the safety arm of this study, have accumulated more living proof that one can take this drug for years and years and years with no major side effects.  So here it is, my blog post from 2012:

 

I’ve got 6 months left on the NIH (National Institutes of Health) trial of DAC HYP. After that, I might not get further access to the drug that has kept the progress of my multiple sclerosis (MS) in check for the past 6 years.
I didn’t panic when I was told the money just wasn’t there to keep the trial participants on the drug. I probably should have. As my sister reminded me, “You think you’re doing OK, but that’s not you doing OK, that’s you on the drug.”
She’s right.
I know, because I get monthly reminders of me-off-the-drug. I can only inject DAC HYP once a month, but the effect usually seems to last only three weeks: the week preceding a fresh injection is a drag. Literally. I pretty much just drag my body around, propping it up until my next dose of DAC HYP, when the “real me” can take over again.
What will I do when there is no next injection?
I may be left dragging around a husk of myself until such time as the FDA approves the commercial release of DAC HYP. That process may take as long as two years.
How much damage can multiple sclerosis do in two years?
I can’t afford to find out. My central nervous system has undergone punishing damage already, from the many years I was on no drugs, followed by the many years I was on bad drugs.
Everyone I tell about the upcoming DAC HYP discontinuation has urged me to take another drug in its place. If I had thought there was a more effective drug out there, I wouldn’t be taking a trial drug, would I?
I’ve had plenty of disappointments with other MS drugs.
Some new ones have come out since I started my trial, and maybe those drugs will prove effective. Or maybe they’ll prove lethal. People have died on MS drugs. At times, my MS symptoms have been bad enough to make me indifferent to such a risk. The “real me”, the one on DAC HYP, doesn’t feel that desperate. We’ll see what happens when access to the “real me” runs out.
Somehow I’ve never envisioned a life after DAC HYP that would include sampling yet another MS medication. I’ve been hoping, I still hope, that I would live to switch out DAC HYP for the actual cure.
You see, I don’t want to medicate my MS. I want to vanquish it.
I’m not the only one. There is talk of an MS “cure.” It’s somewhat hyperbolic, but it’s also compelling. Dr. Wahls, a neurologist in Iowa City, used to suffer from a particularly aggressive form of MS that was rapidly debilitating and drove her into a reclining wheelchair. She fought back by eating every “brain food” she could think of, and by exercising as much as was physically possible. I wouldn’t say she is “cured” now, because I bet her lesions didn’t disappear, but she is certainly doing very well. She can stand for the duration of a TED talk. She is also biking to work, she is practicing medicine full-time, and she is starting a clinical trial to examine the effect of diet on MS. It could be, as she claims, that she has reversed a case of progressive multiple sclerosis. I hope so. Or it could be that she’s on the remitting cycle in a mislabeled case of relapsing remitting MS. I’ve ridden on the high of those cycles, myself, exercising like a fiend on my borrowed time. I’m sorry to say those times don’t last. I wish her the best. Especially since, in six months, the Wahls diet may turn out to be the best option I’ll have left.
But why wait six months?
I’ve been eating aggressively healthy brain food ever since I first heard of the Wahls diet, but now I will start eating healthier still. (This prospect terrifies my husband, who claims I already eat healthier than anyone he knows)
I am perfectly willing to trade DAC HYP for eight daily platefuls of kale, if that would help me. I am perfectly willing to lift weights, swim laps, and practice yoga with twice the intensity of my normal schedule. Indeed, how could it hurt? I can foresee only one downside to this course of action. I know I am perfectly capable of blaming myself for not trying hard enough if—or let’s face it, when—the disease strikes again.
Would blaming myself be so healthy? I don’t think so.
A number of good people have approached me to ask what I “do” to remain so healthy with MS. I say I exercise, I say I eat well, I say I do yoga. They tell me I have a “good attitude.” They tell me others, those sicker with MS, do not. That may just be oversimplifying things.
Here’s the deal: I’ve had access to a good drug. Others with MS have not. In six months, I will join their ranks. We’ll see if a mix of a “good attitude”, a good workout routine and good diet will be enough to see me through until DAC HYP goes on the market. I’m sure it’s all very necessary. I can only hope it will be sufficient.

Ask About Your Medication

Note from the Rat: The medication I refer to as “daclizumab” back in 2011 is expected to be marketed to the public as “Zinbryta.”

It is good to ask questions. Even when the answers aren’t always pleasant—especially when the answers aren’t pleasant.
No one likes to ask questions when things are going well. My first months on daclizumab went really well, so I didn’t bother to ask my nurse about the origin of the clear liquid dripping down the IV tube into my veins. Whatever it was, it was working. My multiple sclerosis symptoms were fading into the background. I couldn’t ask for more than that.
So I didn’t.
Month after month, I had the same nurse arrive at my home for infusions. We took to chatting. The heparin scandal came along, taking the lives of 81 Americans who had assumed—as I’d assumed—that nothing fatal could be lurking in a labeled medication. That month, the nurse told me it wasn’t necessary to flush my veins with heparin. I gave her the go-ahead to use it anyway. I didn’t want to mess with success. Eventually, though, I think we may have agreed to skip the heparin flush. Daclizumab kept on working, either way.
The January 2010 home infusion seemed no different than the others. Neither of us knew it would be our last. As usual, my blood pressure was low, as was my temperature—96.8. As usual, I had no troubling new symptoms to report. The drip itself never took all that long—maybe 15 minutes— and as usual, the nurse and I chatted those minutes away. The nurse mentioned she’d seen me lifting weights at the rec center while she’d been walking the track. I told her it would be OK to interrupt me the next time she saw me there. Neither of us could have guessed there wouldn’t be a next time.
I didn’t start to feel funny until the nurse was gathering her bags to leave. Even then, I didn’t feel funny enough to stop her. My temperature shot up during the interval between the thud of the front door and the clap of the screen door —the screen door hinge is on backward, which makes for a thirty second delay.
I headed straight for the couch, and caught a glimpse out the window of the nurse’s car pulling away. I lay down. Something wasn’t right. At that time in my life, it was unusual for me to lie down while the sun was still shining. I dragged myself off the couch and up the stairs to take my temperature. 98.8.
I wasn’t sure if I should call the nurse. Everybody knows 98.8 is not a fever. But 98.8 was two degrees higher than my temperature of just half an hour before. I was comfortable with that nurse. Even so, I didn’t want her to think I was a big baby. Or a hypochondriac. Or a fool. But then I got to wondering about the contents of that IV bag. Who was to say it wasn’t tainted, like the heparin a while back?
I swallowed my pride. I called the nurse and left a message.
It was a good thing I did.
The high temp resolved itself without any apparent consequence. I felt sheepish when the nurse returned my call that afternoon. But then I heard her news. I quit being sheepish, and shifted into high alert.
Apparently, after listening to my message, she’d called the pharmacist to ask about my drug.
“Guess what he told me? He said I just gave you the last of that medication. It’s been taken off the U.S. market.”
I asked if there’d been another safety scandal. She assured me there had not. “Someone’s bought the entire inventory.”
I wondered aloud, “When was anyone going to tell me?”
The nurse didn’t have an answer for that.
If I hadn’t gotten that little spike on my temperature, I could have easily gone another month without knowing I had to line up a new MS medication. I’d already gone through all the standard MS meds, with no positive results, which was why I was taking an off-label drug in the first place. I didn’t know what I would do without daclizumab. There wasn’t another drug out there I knew of.
There’s a happy ending to this little anecdote.
Yes, it’s true I didn’t get the answer I expected when I asked about my medication. But that unexpected answer motivated me to ask more questions. I managed to track down Bibi Bielekova, the neurologist and researcher who had first put me on daclizumab. She had a new gig at the NIH. I sent her an email on a Saturday, asking for her guidance. She replied almost immediately.
Once again, I didn’t get the answer I expected. Her email contained an offer I couldn’t refuse.
As it turned out, Dr. Bielekova was the one who had gathered all the remaining stock of daclizumab. She’d just negotiated a clinical trial for the next generation of daclizumab, called DAC HYP. She would be switching her patients who’d been on daclizumab long term to this new preparation. She wasn’t sure, but she thought she might have an opening to accommodate one more patient in the trial. My flights would be paid for. Then came the clincher, “The care at NIH, including the drug, is free.”
Now you know how I can afford to make all those trips to DC; I happened to ask the right question of the right person at precisely the right time. I’m going to try to make a habit of that.
My next entry will be a review of the formidable book, Dangerous Doses, written by Katherine Eban, another woman who isn’t afraid to ask questions about medications. The answers she’s uncovered may disturb you. Or they may just motivate you. Dangerous Doses has certainly motivated me. Our drugs are too important to remain a mystery.

Visualization

No matter how gracefully I walk into a neurologist’s office for an evaluation, the dreaded heel-to-toe test invariably punctures my façade.

As soon as I place one heel directly in front of the other foot, I start to sway. My arms float up, like a gymnast…a gymnast on the Titanic. I tilt toward the left. I regain my balance…for one brief hopeful moment. I tilt toward the right. My legs start to buckle. Then twist.

It’s all very suspenseful.

Inside my atrophied little brain, I’m reminding myself of all these tricks I’ve been taught at yoga. I press into all four corners of my front foot. I root down into my tail-bone. I lengthen my spine. Oh yes. I breathe.

I lift my back foot. Gently swing it around my front foot. Start to set it down…

Oops.

Not again.

I tilt toward the right. A little too far. I break my fall…by breaking out of heel-to-toe.

Inside my atrophied little brain, I’m thinking that losing my balance is all my fault. I wasn’t…yogic enough. I didn’t make the right mind-body connection. Of course! Mind-body connection! Why didn’t I think of it sooner? What I should have done was visualize myself walking down the hallway. Visualization. That’s the ticket.

I request another try.

This request typically inspires a panic.

“Oh, no, no, no. That’s fine. You don’t have to do that one over. I’ve seen enough.” And I wind up feeling like an out-of-work actor who has just asked for a re-try on a crappy audition.

The first time I took the heel-to-toe test, I made a lame joke. “I guess my tightrope walking days are done.” The joke fell flat. My stand-up comedian days were dead-on-arrival. Fine. I don’t want to play the role of the wisecracking patient with multiple sclerosis. I don’t want to be in that sitcom. Or even on that channel. I’d rather be on the yoga channel, floating two feet above the gleaming wooden floor without even noticing, a tiny, enigmatic smile on my placid face.

Yeah, right.

Has my practice of yoga been based on unrealistic expectations? Or has my practice of yoga been the only reason I can balance at all? Without yoga, would I be in a wheelchair by now?

I cannot say. I don’t have a control group; a clone or a twin sister with multiple sclerosis who thinks yoga is a complete waste of time.

What I can say is that my expectations for my balance are consistently higher than my performance in the heel-to-toe test.

My performance in my normal daily routine can be fairly convincing. Contrary to what my blog posts may have you believe, I pass for a relatively fit healthy woman at least 90% of the time. In public. Before 8 pm. But still. I’ve got a good façade going. I’m fond of it. I don’t want that façade punctured. Which is why I don’t like the heel-to-toe test. Not one bit.

I never thought I could ever meet a person who could make my objections to the dreaded heel-to-toe test seem petty. That was before I met Dr. X.

I wasn’t supposed to be meeting Dr. X in the first place. My appointment was with Dr. Y. It so happened that Dr. Y was running behind, so she sent in a resident: a black man in a wheelchair. To see me: a white woman who felt irked every time she was asked to take the dreaded…never mind.

When Dr. X had me take the dreaded heel-to-toe test, I failed it, as usual. But this time, failing the heel-to-toe test felt fairly privileged. At least I wasn’t stuck in a wheelchair. Without a doubt, Dr. X would gladly trade places with me in a flash.

Or would he? Was Dr. X’s life really all that bad? Is mobility, or lack thereof, the decisive factor in anyone’s quality of life?

As we chatted, I came to see that Dr. X’s life was actually pretty good. He was nearly done with medical school. He was on the verge of a lucrative career. He had a job lined up for him in his home state, where he could live near his beloved family of origin. His upcoming move wasn’t all he was looking forward to; he was getting married in a few weeks. His honeymoon plans included snorkeling in the Caribbean.

My atrophied little brain thought it appropriate to mention a book I’d just read, The Body Has a Mind of Its Own. I enthused about the data showing that visualization could improve sports performance, and shared my plans to visualize walking down my staircase without using the banister.

Dr. X’s response? “Use the banister.”

I take it Dr. X doesn’t visualize leaping out of his wheelchair. Or passing heel-to-toe tests. Dr. X is more focused on what his brain and his body can actually do. I’ll be the first to concede, his brain and his body can do quite a lot. So much for visualization. Maybe there’s something to be said for looking around, and seeing the world clearly. The world is a beautiful place, from any perspective. I bet the world looks spectacularly beautiful while snorkeling in the Caribbean.