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.
I haven’t written any blog posts for a really long time. I’ve had a good excuse. I had to pee.
I mean it. I’ve really had to pee. Multiple sclerosis causes my bladder to be both overactive—so much so that I rarely go ninety minutes without rushing to the bathroom—and under-active—so much so I have to use a catheter to completely empty.
Unrelenting runs to the bathroom have been not so good for my sleep patterns, not so good for my clarity of thought, and not so good for my travel plans. But that didn’t stop me from making travel plans. My son lives and works with his girlfriend, MC, on the other side of the planet. When this adorable couple invited my husband and me to stay with them in Beijing, there was no way we wouldn’t go. I love my son more than all the pee in China.
In the weeks leading up to the trip, every time I announced, “I’m going to China,” I’d feel mildly surprised I wasn’t asked, “How the hell will you manage that?”
Twenty five years of living with MS has made me pretty good at bluffing good health, but even I can’t bluff my way through frequent bathroom runs.
Hadn’t my friends noticed I rarely can get through a whole movie without excusing myself to run to the bathroom? Hadn’t my workshop students noticed me having to take bathroom breaks in the middle of ninety-minute sessions?
My anxiety about my bladder permeated all of my travel preparations. When I switched my language of choice on my Duolingo app from Spanish to Chinese, the first word to pop up on the app consisted two figures: the figure on the left looked to me like a distressed lady crossing her legs because she has to pee, obviously—whereas the figure on the right had its arms outstretched, blocking the distressed lady’s way. Yes, I have the magical power of turning a language app into an ink blot test.
The distressing ideogram was paired with a sound. My American ears heard the word: “how.”
I wondered how I was ever going to travel through China—not to mention to China—when I always have to pee?
The flight to China would be an overnighter. On ordinary nights, I get up four to six times to pee. I kept picturing myself seated in the middle of a long row, squeezing past passenger after passenger after passenger, disturbing their sleep—“Excuse me, Excuse me, Excuse me”—every 90 minutes.
And that’s what I could expect if conditions were optimal.
The sad truth is, I’ve been getting UTIs on a monthly, sometimes bi-monthly basis. For those of you who have never had a UTI: congratulations. UTI stand for urinary tract infection, or Unrelenting Torturing Incontinence. To add agony to the inconvenience, every time you pee with a UTI, it stings.
Chances of my getting a UTI during a two week trip? Between 50-100%.
Air travel with a UTI? Been there. Agony.
And even if I did make it through the overnight flight, how exactly would I make it through China? Our son wanted us to explore a few cities while we were there.
What would the public restrooms be like in China?
Our son warned us most public restrooms featured squat toilets. He advised us to practice squatting. I practiced. Our son mentioned most facilities were BYOTP—Bring Your Own Toilet Paper.
My husband had to talk me out of packing a roll.
I called my capable mother to air my anxieties. She has answers for everything. Worried about a UTI? Get antibiotics. Worried about having to pee? Get diapers. “They make diapers differently now,” she said. “More comfortable.” More comfortable than the ones she’d pinned on me in 1967? And possibly—ahem—larger?
Gentle reader, I got myself the antibiotics. When I ran out of time to procrastinate further, I drove out of town—out of state—to buy myself adult diapers. For double protection, I picked out overnight pads as well. I reminded myself that astronauts wore diapers. Who looks down on an astronaut? Nobody. Diapers could be seen as elite-wear for the long distance traveler. As I approached the check-out counter, I noticed I was the only customer. The cashier had no one to focus on but me, and those diapers, and those pads. My astronaut justification started to wobble. Wasn’t there some crazy astronaut lady who wore an adult diaper on a cross country drive to avenge a love spurned? Everybody looked down on that astronaut. I silently reminded myself that I had a longer trip ahead of me, and a better motive: a mother’s love.
As I set the items on the belt, I forced myself to make eye contact as I returned the cashier’s greeting. I hoped the cashier didn’t see a middle aged nervous wreck with MS buying diapers and overnight pads for herself, but rather a high strung, healthy woman performing the duties of middle age—buying pads for herself and diapers for her fragile old mother—a fiction that could only hold with a cashier who has never met my mother, who is generally the most robust woman in any room. The cashier conveyed absolutely zero shock or pity, enabling me to maintain my dignity. So I got through that purchase. How would I get through China?
I’ll tell you. China was nothing like I thought it would be. Let’s start with the meaning of that first character that popped up on my Duolingo app, the character that sounded like the English word H-O-W. It happened I would meet a friendly native speaker at a Beijing art gallery who would tell me the actual meaning of the word “Hāo.” As you may have guessed, the word has nothing to do with a distressed lady being blocked from accessing the bathroom by an obstinate man with outstretched arms. Hāo, she assured me, means “good.” Hão was also a part of her name.
Was my ink-blot interpretation of the figures in that ideogram something other than an instance of preternatural second sight?
Not so fast. Gentle readers, on my journey I would indeed meet an obstinate man who would physically block my way to the bathroom when I was in acute distress and had to pee. But I wouldn’t meet this imposing figure in China. I would meet him in the Toronto Airport.
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!