Last week, when Covid-19 still seemed an abstraction to many in the US, I made the decision to self-sequester and to drop all unnecessary activities. It was a no-brainer to drop my writing workshop at a local senior center, especially since I am immune-compromised myself. But I vacillated for days about dropping my clinic visit at the NIH (National Institutes of Health).
Maybe that’s because I’ve formed an identity around participation in clinical trials, as this video, and indeed this blog, attests.
Currently, I am enrolled in not one, but two, clinical trials at the NIH. Participation in the first of these trials is contingent on this little lab rat reporting to the maze every six months. I’ve been a fairly compliant lab rat. But as the threat of Covid-19 became more imminent by the day, I became more and more leery of jumping back in the maze.
What if I were exposed to the virus on the airplane, or on the Metro, or at the NIH itself?
As the date of the clinic visit approached, I half expected the clinic would cancel my appointment for me. With less than a week to go, the clinic had yet to send me the usual itinerary, or to arrange my flight. The email I finally got from the clinic coordinator was not a cancellation, but rather an offer to splurge on a taxi for me. Which was a nice gesture. The clinic would be sparing me from exposure to the virus on the Metro. But…while they were at it, why not spare me from exposure to the virus in the clinic, or on the flight?
I’m embarrassed to admit that it took me days to consider the inverse of these scenarios. Rather than worrying about catching the virus from those I would encounter — why had I not been worrying about the possibility that I am myself a carrier of the virus, and could therefore pose a danger to others? What if I were to infect the clever nurses, the intrepid doctor, my fellow lab rats, and perhaps the lovely cashier at the hospital cafeteria?
I wouldn’t be able to live with myself.
I cancelled the appointment.
Yesterday, I was relieved to discover that my on-again, off-again fever was on again. I emailed the clinic that I had a temp of 99.6… which is next to nothing, as fevers go, but would be high enough to disqualify me from lodgings at the NIH.
The world around here is about to get a lot scarier. It’s about time I get used to the thought that it isn’t anyone else’s job to save me. I wish I hadn’t felt I needed an excuse to legitimize trusting my own sense of self-preservation over the professed concerns for my safety from the NIH. But I did.
Was I worried that this somewhat indefinite postponement of my clinic visit would mean I lose my Lab Rat status?
Not at all. Gentle Readers, you may recall I that mentioned I was enrolled in two clinical trials. The trial I haven’t yet mentioned is one I participate in from the safety of my home. I am one of 25 lab rats beta-testing a series of games on smartphones. These games are designed to measure neurological functions. While this smartphone app may never take the place of a clinic visit, it may yet prove helpful in situations where a patient can’t show up in a clinic. Like, ya know…in a crazy dystopian scenario where a mysterious virus is taking over the planet and an MS patient no longer feels it’s all that safe to travel.
Twenty five years after receiving a diagnosis of multiple sclerosis, I am lucky to still have the option to decide whether or not to reveal my condition to a new person or group. I’m not MS closeted, but I do like to wait until I’ve already formed an impression before I am designated/dismissed as “disabled.” I’d rather expand peoples’ conceptions about MS than contract their conception of me.
I wasn’t sure if, or when, I would share that I have MS with the tai chi class I’ve just joined at the local rec center. The first session, I’d flowed along with everyone else and hoped I would have energy remaining for teaching my class with college freshmen in the afternoon. Once I verified I could perform both activities in one day, I thought I’d be ready to add this new tai chi class to my schedule.
When I went back for my second session, I stood with the other students and watched our instructor demonstrate the complete series of sweeping, balletic motions we would all be working towards. Most of the series looked like it might eventually become achievable for me. But not the kicks.
We’d just spent the past hour meditating on our feet, then doing repetitions of the first three moves of the complex series. I’d been feeling like a badass for merely staying upright all that time. The instructor singled me out, as the newcomer, informing me I would one day be able to execute all the same moves he had just performed.
As much as I don’t want to get in the way of reaching my full potential, I couldn’t see that my future would ever include a series of high kicks. I’d been feeling it would be enough for me to eventually execute the complete series while making smaller movements that merely approximated kicks.
It was time to dial down the instructor’s expectations.
So I made the call. I disclosed to the group that I have MS.
The woman who’d been practicing beside me was baffled. She told me she’d worked with a lot of people with MS, and I don’t look like any of them. She said, I guess you know all about the latest drug.
A few years ago, I would have rattled off the good news about the latest drug, the one that had stopped my very aggressive case of MS. I would have told her how I’ve been commuting for years to the National Institutes of Health (NIH) for my doses while waiting for the FDA approval to release untold thousands of MS patients from the shackles of disease progression. Life sure didn’t turn out that way.
I said, “There is always a latest drug. I’m here because I’m interested in the oldest treatments.” Since she was clearly a regular, I asked her how one pays for the class; she told me I could work it out the following week. We both assumed I’d be back.
That was a week and a half ago. Since then…my son texted. His text put a check my lifestyle.
Everyone who knows me knows I love my son. I love him more than all the pee in China. I have traveled to the other side of the planet for my son. At his request, I am now going to hunker down.
The other day, he texted from Indonesia to remind my husband and I about the dangers of Covid-19. “There is a two-week plus lead time, so it might be wise to start hunkering down before there are any tri-state cases.”
Now, this young man happens to be living in the future. Literally. The sun rises for him 13 hours before it rises for us. He has spent the last year and half as a consultant based in China. When we visited, my husband and I saw for ourselves that China is ahead of the US in many ways, some positive—China has way more efficient mass transportation—and some negative—China has way worse air and water quality. Sadly for China, they’ve been way ahead of us with Covid-19.
Which ought to mean, we have been given an opportunity to prepare.
My son and his girlfriend MC managed to get out of Beijing in late January, while there was still time Thankfully, Thailand accepted them. They’ve been on the run from Covid-19 ever since.
As an, ahem, older person with multiple chronic illnesses, it makes sense for me to take Covid-19 seriously, and to cut out all unnecessary exposures. My schedule is jam packed with transcendent, meaningful, one might say, necessary, exposures—which start to look foolhardy when viewed through the lens of Covid-19,
Yesterday I cut out what is probably my most dangerous exposure—my weekly workshop with the over-70 set at a senior living center, who are feeling as vulnerable to this virus as passengers on a stranded luxury cruise.
I will miss these writers badly, but the sad truth is, our workshop was already flagging. In the five years since the workshop began, ten of the writers have died. Seven are currently out of commission with health problems, and yes, one of those seven has a very bad cough. The two writers who’d shown up for workshop yesterday didn’t blame me for getting out. I love so very many people in that complex. I hope they will be spared.
It was a no-brainer to decide to cut out the yoga class and the tai chi classes I’ve been taking at the local hospital…which may be the second most likely location for me to catch Covid-19. It was an easy call to suspend my gym membership. And as much as I love my yoga class at my neighborhood studio, I’d made a promise to my son. The new tai chi class will of course be the easiest unnecessary activity to cut from my schedule. Maybe some day I’ll be back. Maybe some day I’ll be doing those high kicks. It would be a shame to have fessed to a whole new community about my MS for nothing.
I am not even considering cutting out my class at the art college. Those students are too young to catch Covid-19. Right? I counted seven students coughing yesterday. For once, I’d hoped they’d been smoking cigarettes or sucking down bong hits.
Today, I have a fever. A mild one.
Which caused me to call off the usual weekly writer’s workshop at my house. I can’t tell you how many workshops I’ve held while staving off a fever.
My husband and I love our quirky uptown neighborhood of Clifton. We love Clifton for its diversity, its walkability, its independent movie theater, its big urban park. When we moved here sixteen years ago, we noticed that there were an awful lot of eccentric looking, opinionated old folks drifting around Clifton. The scene I’m about to describe from this morning is all too typical.
Setting: Checkout counter at CVS Pharmacy on Ludlow Ave, 9:10 am
Middle aged lady, silver streaked hair in a messy bun, wears an embroidered dress, bare legs, no socks, and school-bus yellow Converses. She plops a pair of gray yoga pants onto the CVS counter.
Middle aged lady: “I walked all the way to yoga class and forgot I wasn’t wearing any bike shorts underneath.”
CVS employee: “Would you care to add a donation to fight Alzheimer’s?”
Middle aged lady: “No way. I’m not going to help you look like the good guys when you sell drugs like Benadryl, which have a 50% correlation with dementia.”
CVS employee: “Have a nice day.”
Had I been standing in line behind that middle aged lady, I might have rolled my eyes to express sympathy for the poor check out guy, who has just been lumped in with those CVS top executives choosing to ignore the mounting evidence that drugs they sell daily are largely responsible for the growing epidemic of dementia. But I didn’t get the chance to roll my eyes at that middle aged lady, because I am that middle aged lady. Doctors I trusted have exposed me to a number of anticholinergic drugs, which are in the same risky class of medication as Benadryl.
The first time I was on a drug to calm down my bladder, I noticed right away that I was not participating in conversations as fluently as usual. When it eventually occurred to me to look up the side effects of my new medication, I read about “drowsiness,” “memory problems” and “dementia.” My urogynecologist laughed at me when I complained the medicine made my thinking fuzzy. “You’d rather think? And run around having to pee?” I quit the medication and fired that doctor. Then found that every subsequent urogynecologist was equally eager to fill a prescription for an anticholinergic drug, even after I made my preferences known, even after data from study after study confirmed an eery “correlation” between these drugs and dementia. Apparently as long as big $ is being made, this “correlation” won’t be labeled a “causation.”
That’s why I’m forever grateful to Kevin, my local pharmacist at Clifton GHA. Kevin alerted me when my current urogynecologist snuck in a prescription for an anticholinergic medication, despite my stated aversion to that class of medication. From now on, I’ll add the folks at GHA to the reasons to love my quirky little uptown neighborhood of Clifton.
Gentle Reader, if you are nervous about the side effects of your own medications, don’t listen to dotty Ms. Lab Rat. Listen to the bloggers at Harvard medical school:
“One of the best ways to make sure you’re taking the most effective drugs is to dump all your medications — prescription and nonprescription — into a bag and bring them to your next appointment with your primary care doctor.”
I’ve done the worst thing a blogger could possibly do: I have posted a part 1 of a story, and then neglected to post a part 2.
I’ve had not one good excuse—but a string of good excuses: I’ve had a UTI, then another UTI, then another UTI. (Or maybe the same UTI?) This string of UTIs led to a string of antibiotics. Which led to c-diff. Which led to the bathroom. Just as I was delayed in writing Part One of All the Pee in China because I had to run off to do Number One all the time—I have been delayed in writing Part Two because I’ve had to run off to do Number Two.
I’m used to going to work sick (I’m always sick—I have MS) but I’ve had to cancel all my workshops. I’ve had to skip my yoga classes, and my tai chi. I’ve had to step away from my public identity. This morning I got up and put on my wellness drag: I darkened my brows, lightened the circles under my eyes, applied moisturizer to skin that is dry. My body isn’t buying it. I had twenty-four hours without a fever, but I am still not well. I need to rest.
Gentle Reader, we will have to wait a while longer for part 2. No doing is the best thing I can do.
On my most recent trip to the NIH, I was hoping maybe I would be disqualified for the TRAP-MS study, which evaluates four existing FDA-approved medications for their potential to reverse progression in multiple sclerosis. I don’t like that I have disease progression, and therefore qualify for the study. But if I am someone whose MS is progressing, I like the option of being first in line to take an FDA-approved medication that might help.
This was my second six month check-in to establish a baseline on my status with my new MS drug, Tecfidera.
Before I flew out, Dr. W, my NIH doctor, told me there was a chance I’d test out of the trial, since I didn’t have much progression to medicate. I wasn’t as optimistic about my lack of MS progression. My fall this January didn’t just fracture five bones in my face—it fractured all the routines I’d set up to live as healthily as I could with MS. I’d only just started going back to the gym. I hadn’t yet returned, wholeheartedly, to the Wahl’s-ish diet I’d been following.
During my summer exam, Dr. W had clucked at my balance— “your balance is shit”—and the lack of resistance in my right leg:—“so weak.” What would my balance be like after two months of not daring to challenge it? What would my strength be like after two months of barely any dog walks and zero visits to the gym? Thankfully, this setback didn’t prompt an MS relapse. But if there was going to be a time when my MS might be progressing, it would be now.
I’d been instructed to “take it easy” before my clinic visit. But that morning, I had pushed myself to the verge of immobility.
As I entered Building 10, my spirits rose. Maybe it was the profusion of plants, or maybe the profusion of people. I noted there was new art on the wall.
I noted there was still no additional entry in the display of Presidential Visits.
Luckily, the first appointment on my schedule was at Phlebotomy, which involved sitting, first in the waiting room, and then for the needle. That gave me some time to recover from all the walking I’d done through the airports, the Metro, and the NIH campus.
When my number was called, I got the same needle master as I’d drawn on my visit the previous summer. I recognized the fan letter he’d posted about his ability to make a two year old smile while drawing his blood.
The testimonial hangs strategically at eye level of the person waiting to get their blood drawn. It is terribly effective at arresting any impulse to cower or cringe. Nobody wants to come off as a bigger baby than a sick two year old.
Did I, like the sick two year old, leave smiling after having my blood drawn? I doubt it. I’ve not been known to smile until after I’ve had my second breakfast. I soon discovered that my favorite cafeteria—on the second floor in the new building—was closed for remodeling. I found my way to the alternate cafeteria in the basement of the old building. I loaded up on greens and root veggies and proteins. The meal provided all the rejuvenation I needed. By the time I stepped off the elevator on the fifth floor and rounded into the clinic, I no longer had a limp. Seeing Diane, a nurse I’ve known since my first NIH visit, put me in the mood to smile.
Since returning to real life after my big fall, I’ve become accustomed to being greeted with “Your face looks good!” If I chose to take “looks good” as meaning anything more than “not permanently damaged,” it is because I latch shamelessly onto the positive.
Diane obviously didn’t get the memo about the five facial fractures. Instead of saying, “Your face looks good!” she greeted me with a hug and a frank assessment. “We’re getting old!”
True enough! I, for one, don’t mind looking (or getting) old. I’ve earned my silver stripes. Besides, those strands provide an instant, socially acceptable explanation for a slow or unsteady gait. It’s not that I am MS closeted—it’s just that not every distressed person stuck behind me on the staircase really wants or needs an explanation of the ravages of autoimmune disease when an assumption about the ravages of age will do.
Diane didn’t look any older, and I told her so. Diane is remarkably stable. She just doesn’t change. Case in point: the day I met her, she had just won a prize in a weight-loss competition between nurses on her floor. Here’s the catch: Diane had won by losing a mere pound and a half. If Diane has had any weight fluctuations since then, they have probably been within the same range. Diane has had the same haircut as long as I’ve known her: same bangs, same color, same length. Diane stays Diane. I wouldn’t want her any other way.
Jen, the other dear nurse I’ve bonded with from the start—swooped in to agree with Diane’s assessment, “We are getting old!” as she grazed my cheek with a kiss. Jen’s hair was red that afternoon—her hair is a new color, a new style, every time I see her. Jen tends to pretend she’s disorganized or absentminded or late. True to form, she crafted an overly-elaborate explanation for why she couldn’t linger as she dashed off down the hall on her sturdy Doc Martens.
Diane wondered aloud, “How long have you been coming here, anyway?”
I guessed, “Maybe nine or ten years.”
Diane pulled up my file. “Since 2010. Nine years.”
When I’d first come to the NIH, I’d been chasing daclizumab, the only drug that had managed to stop my MS relapses. After the NIH had requisitioned all the supplies of it, I was more than grateful that there was room in the trial of the drug for me. For the three years of that trial, Diane and Jen had taken my weight and my blood every month. Once that trial was over, I was permitted to continue to take daclizumab though the NIH “safety study” while we all waited for the FDA approval. I flew in every six months for monitoring and new drug supplies. Once the drug was approved, we took what may yet be a final group photo.
Thanks to TRAP-MS, we were back together again.
While Diane was at her computer, she got a notification on my labs. She scrolled down two screens of data. “Your labs look good.”
I thanked her, and told her how, the last time I’d visited, I gotten my lab results on my phone just as I was about to get on my departing flight. The cholesterol was marked in red, and looked way high. I was freaking out that the diet I was on was going to give me a heart attack. Doctor Google hadn’t been much help.
“Stay away from Doctor Google. You should call us when you have a question.”
Diane scrolled up, “Your good cholesterol is what’s really high.”
Then Linh, one of the graduate students, stuck her head in the office. She was ready to give me my tests.
We started with the timed 25 foot walk. Considering I had been limping just an hour or so earlier, I wasn’t optimistic about the outcome. Still, I’ve been conditioned to give these tests my all, so when it was time to march from one masking tape line to the other, I barreled along the hall like I was on my way to lift a screaming baby out of a vat of boiling water. Then I turned around and barreled right back. My fear of falling paled in comparison to my fear of failing. I did not fall.
I announced, “My healthy appearance is a flimsy veneer.” Like the NIH don’t know that. Test by test, I went all out, competing with my better-rested summer self.
As Dr. W. examined me, she seemed gentler than last time. She didn’t push as hard for the resistance tests. She didn’t chide me for being weak. When I messed up on the heel-to-toe test, she let me re-take it. Twice. Not that I did any better.
Overall, Dr. W was enthusiastic about my condition. She told me maybe the rest I’d had was doing me some good. Or maybe the Tecfidera.
When Dr. W. called a few days later with the results of my visit, she assured me the MRI looked stable. She told me I’d actually performed better on some tests, like the peg test, than I ever have. But overall, my numbers still nudged a bit in the direction of progression. As long as there is a progression of my disease, I will continue to qualify for the study,
Dr. W wished me luck in getting disqualified from the study when she sees me next time in six months. As much as I love this crew, I would love to be too healthy to see them.
Thirty years ago, I was introduced to a guy at a party who said he was a writer. Reader, I married him. His non-fiction sketch, Bus Portraits, got published this morning by X-R-A-Y Literary Magazine. The physicality of this piece knocks me out. And yes, it does belong on a blog about disability.
Tom Grogan, a writer in my Tuesday workshop, recently wrote an eloquent essay about the pain and loss he felt when he gave up driving. It was published by the Cincinnati Enquirer.
As far as I know, the two men have never shared a bus ride together.
After watching two videos from Aaron Boster, MD I discovered that I like the way he talks about MS; I like the how he describes ways to make the best of living with it. At the end of the day… why not make the best of any situation that you are in? http://www.youtube.com/watch This video […]
My husband and I are waiting at our gate for our flight to Dulles. I’ll be back at the NIH (National Institutes of Health) tomorrow morning at 7am to start anew with the TRAP trial.
This trial is exciting, because it is trying to address the woes of those of us who are no longer deriving much benefit from MS drugs.
MS drugs are most effective when they are started very early in the disease process. Over time, their efficacy declines. While FDA approved MS drugs have varying rates of success at preventing relapses, none of them are all that great at penetrating the brain tissue, where inflammation hides. The longer you have MS, “compartmentalized inflammation” insidiously drags you down, even as your MRI shows no new lesions.
The TRAP trial is investigating four inexpensive time tested medicines to see how effectively they work to counter the stealthy decline within cells in those of us with the progressive form of the disease.
The four drugs are: Pioglitazone, Montelukast, Losartan, and Hydroxychloroquine.
The trial is testing the performance of these drugs when taken alongside standard MS drugs, so as not to abandon whatever potential benefit the standard MS drugs may confer. When I’d first signed up for the trial, I’d been on Zinbryta. When Zinbryta got pulled from the market in February, I was instructed to stop taking the supplementary medication from the trial as well. Now that I am on a steady course of Tecfidera, it can be paired with one of the four investigatory medications when I start the trial anew.
Tomorrow they will be running a battery of tests on me at the clinic. I will be interested to see if I’ve been on a plateau since I stopped taking Zinbryta and the TRAP medication, or if the plateau has been…dipping a bit. No matter what news I get, I’m going to keep running up the down escalator as fast as I can. I’m not going to passively rely on medication. My own wellness program includes: a Wahls Diet, so many supplements, mini-weight lifting, meditation, yoga, walks with the hubby and dogs, deep friendships, and meaningful work that supports others.
Which reminds me, thanks for reading this blog. And deepest thanks to those who have endorsed my nomination for Patient Leader in the #WEGOHealthAwards, as well as those who have gone so far as to link to my video. Reading your passionate testimonials makes me feel like Tom Sawyer spying on his own funeral!
On June 23, I finally realized I shouldn’t reduce my blog to being just about me as a person with MS. I’ve got a lot more going on than a chronic disease. When I’m not telling my own stories, I’m working to help others tell their stories. And often enough, my students have successes that ought to be shared. I vowed on this post, ” From now on, when one of my students deserve a pat on the back, I’m going to go ahead and pat.”
A long time member of The Clifton Writer’s Workshop, a group I facilitate, just had a fine editorial published in The Cincinnati Enquirer.
I do hope you follow this link and read Andrea Rotterman’s nuanced piece about a her dual roles as gun owner and gun violence survivor. She labored over this essay, because she wanted to get the details right. All too often, the press presents gun ownership as an issue that is black and white. I love that her editorial ends with questions, not answers.
Does a link to an editorial on gun violence belong on a blog about multiple sclerosis? Gun violence is a more pervasive health problem in this country than multiple sclerosis. There’s only about 10,000 new MS cases diagnosed a year. The CDC published data showing 38,658 gun deaths for 2016, including suicides. It seems to me it should be easier to eradicate gun deaths than it’s been to eradicate MS. But as Andrea’s editorial shows, nothing is as easy as it looks.
I’m so proud of Andrea for joining in our national conversation. It takes a lot of guts!
If you like what I do, please endorse me on the WEGOHealth page to amplify my voice and the voices of the chronically ill. Thanks for reading!
My husband is walking our two houndmutts as I, with my sticks, am trying to keep up.
HUSBAND: So what’s the itinerary at the NIH? Do you get the spinal tap the first day, or the second day?
ME: The second day. My last visit they gave me the spinal tap the first day, which was ridiculous, because then I had to perform all the evaluative tests the second day while I was still recovering and had a mild spinal headache, so obviously my scores would have turned out lower than optimal. But in a twisted way I’m kind of happy those scores were probably lower than they should have been, because now my decline won’t look so steep, since this time they’ll be testing me before they drain my spinal fluid. I’m kind of self conscious about my pronounced decline.
HUSBAND: (Glances down the street.) Look at the pretty flowers.
ME: (laughing) Like you ever say, ‘Look at the pretty flowers.’
We walked on. It was a pleasant walk, after all.
There are a lot of pretty flowers in our neighborhood.