A Valentine’s Day Meditation On My MS Medications: 2021

I have five exes. Five medications I allowed to enter my body because I believed they would stand up for me against my nemesis, multiple sclerosis (MS).

One of my exes hurt me. One of them stood me up— then ran into trouble with the law the morning after our one-night stand.   One was nice, but ineffectual. One of them transitioned to a long distance relationship, then went on the market, then made me a widow.  The last ex was only effective at making me blush. I am currently unattached to any medication on the commercial market.  I do have a new partner, though, one I find very satisfying. Read on.

I hooked up with Avonex in ’96. Let’s say that Avonex was like that kid who impresses all the grownups with his good looks and good manners, then insults them all behind their backs.

Avonex was my first. He caused me nothing but pain.

The day I started Avonex, my breasts were rock hard, and weeping. I had made a sacrifice for Avonex; I had weaned my sixth month old son. The Avonex needle was long, the procedure confusing. After each weekly injection, I ached all over for days. Everyone said it would get easier. I never did get used to the needle, or the muscle aches, or the joint aches, or the flu-like symptoms. Only my boobs bounced back.

Avonex and I only lasted nine months. Not my fault. I injected faithfully. Avonex didn’t hold up his end of the bargain. I had another MS attack. After all my patience, through all my pain, Avonex had done nothing to fend off MS. As soon as I got back from the hospital stay, I called it quits with Avonex. I was tired of being his pin-cushion. Cutting my ties with Avonex meant cutting off the entire Interferon family. I wouldn’t give his cousin, Betaseron, so much as a glance. Was it a clean break? No. Avonex was clingy. It took months—no—years, before I stopped feeling lingering joint pain from you-know-who. Since then, I’ve met only one girl who claimed Avonex was treating her right. I wished her good luck. Avonex just wasn’t my type.

After Avonex, I went on a series of blind dates down in New Haven in a clinical trial for rock star Tysabri. I wasn’t allowed to know if I was with the real Tysabri, or his placebo twin brother. As the lack-luster months went by, I began to suspect I wasn’t involved with the rock star I was hearing so many great things about. I sure wasn’t dancing until three in the morning, or resuming my tight rope routine. I did my due diligence, and kept making trips to New Haven for the sake of science until the study was up.

Once the Tysabri trial was over, I went for wholesome boy-next-door Copaxone. Which was better than nothing. Or so I was told. Copaxone required a shot every day.  The needle was…small. The side effects were…non-existent. Copaxone wasn’t going to hurt me. But did it help me? I couldn’t tell.

I believed in Copaxone. I had hope for our future. I shot up faithfully, day after day after day. I felt sorry for other girls, stuck with fickle meds that gave them nothing but side effects. Over the years, maybe I got too complacent. Maybe I ignored a couple of symptoms I shouldn’t have, like my fingertips going all numb and tingly.

When I relapsed on Copaxone, I did not even know it. I was shocked to learn my brain had developed a black hole. Copaxone let me down gently, which made the betrayal all the more insidious. I had no choice but to call it quits.

After I dumped boy-next-door Copaxone, I wanted to go for Tysabri. The real Tysabri. The rock star. After all those precious months I’d invested with the placebo twin in the Tysabri trial, I felt I deserved the real thing.

Tysabri and I did finally hook up, but it turned out to be a one night stand. The very next day, the Feds found out about Tysabri patients who died in the trials, and the parent company yanked Tysabri off the market. Maybe I was actually lucky to have been matched with that boring old placebo. I later learned we are incompatible.

Tysabri and me were not meant to be.

Looking back, I wonder if I got benefit from any of those early exes. I relapsed on all of them. They were all expensive, with price tags of over 1k/month. Did any of those fancy boys slow down the progress of MS even a little bit? I’ll never know. Perhaps all I got out of those medications was a sense of hope. A false hope can get a girl out of bed in the morning. Which is all very nice, but a false hope can also keep a girl from looking for The One.

When Tysabri dropped out of the picture, I had a nice long cry in the shower. Then I got online to hunt for the next dreamboat. As one does. I was desperate, so I was willing to get a little kinky. The med I chose wasn’t actually being prescribed for people with MS. It was being prescribed for organ transplant recipients. But I figured it worked the way I needed it to; it calmed the immune system. I persuaded a brilliant researcher to prescribe Zenapax off-label. The next three years were our honeymoon years. I would get a monthly blast of Zenapax through IV.  Whoah, baby! I never felt so alive. Like a superwoman. My relapses stopped. My body was fully functional. I knew not to take that gift for granted. I got fit. I got happy.

Then one day, Zenapax went away. The brilliant researcher had taken all the inventory in the United States to use in a study at the NIH (National Institutes of Health.) She changed his name to DAC-HYP, and changed the delivery method to sub-q. I was willing to be flexible. DAC and I had a long distance thing going for years. I would fly in to Baltimore, stay in hotels, meet up at the NIH. DAC continued to protect me from MS progression, but our relationship was not the same. With the sub-q injections, I no longer felt like a superwoman. But I stayed faithful.

When DAC finally got FDA approval, he changed his name again. He went on the market as Zinbryta. I thought  that once other girls with MS got to know him, they would all be changed, like I was. That happy ending was not to be. There were rumors against Zinbryta from the start. Black box warnings. A few people died in Europe. The FDA had him bumped off. I became a widow.

I kind of wanted to stay single for a while. Play the field. I found the field was full of possibilities…that were fairly ineffectual for anyone over the age 50. Nonetheless, no one likes to see an unattached MS patient. I felt a lot of pressure to move on to the next med. My doctor fixed me up with Tecfidera.

Tecfidera made me blush. But not in a good way. My skin would go hot and fierce from head to toe. I blamed myself for my reactions—don’t we all do this, ladies, when we are in a bad relationship? I thought maybe I should remember to take Tylenol. Or maybe eat more fat. Or maybe I should….

When Covid struck, I though maybe I should dump Tecfidera. Maybe I didn’t need any interference in my already complicated immune system.

For the last year, I’ve been practicing Qigong. It’s good medicine. And it doesn’t favor younger women. The only side effects so far have been health and happiness. And here’s the wild part. My husband has gotten into practicing Qigong alongside me every night. We’ve got a threesome going on.

p.s. My thanks and praises for this illustration goes to artist Robyn Singerman, TA for my Artist as Writer class this semester.

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Postponed Post: All the Pee in China, Part 2

Here is the link to read, All the Pee in China, Part 1.

This is the blog post I didn’t want to write. The post about how I leaked pee. In public. During our 2019 trip to China. Because a man blocked me from using the restroom. 

I knew in advance that this incident would occur. I’d had a Terrible Vision. 

The Terrible Vision did not come to me through a dream. I don’t dream—I can’t dream—my overactive MS bladder wakes me, on average, five times a night. I never get a chance to reach a dream-inducing REM state, because I’m too busy jumping in and out of bed.

Since my Terrible Vison had no opportunity to reach me through a dream, it reached me through an app. The instant I opened my first Chinese lesson in Duolingo, I was confronted with a word that consisted of 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 looked to me like a man standing with his arms outstretched so he could block the lady’s way—to the restroom, obviously.  

Those figures together could only mean one thing, right? They had to form the Mandarin word for “bad.”

According to Duolingo, those two figures formed the Mandarin word for “good.”  

So much for my intuitive grasp of Chinese. 

Our son had warned us that bathrooms would be different in China: some bathrooms had squat toilets, some lacked toilet paper, some were dirty. On those last points, maybe Chinese restrooms wouldn’t be all that different than American public restrooms. My earliest memories of the restrooms at Marconi Beach gave me the useful life skill of always checking for toilet paper before sitting down. Would this life skill be sufficient preparation for the public restrooms in China? I was about to find out. But not before I crossed the hurdle of an all-night flight; as this trip to China was sort of last-minute, we had booked our flights too late to secure the aisle seat necessary for a passenger with my special needs. I projected I would repeatedly rouse all the sleepers in my row.

The one aspect of our impending air travel that I wasn’t worried about was the first leg of our flight, a ninety-minute hop to Toronto. As we boarded that first flight, I reminded myself that no one could tell I was wearing my first ever adult diaper underneath my dress. I’d reinforced my armor with an overnight pad. I was invulnerable! I stowed my sporty messenger bag underneath the seat in front of me. It contained: my wallet, my passport, three additional overnight pads, two spare adult diapers, one spare set of stockings, one spare dress. As I settled next to my husband, I realized we’d finally reached the point where there was nothing left for us to do. The next thing I knew, I was waking from a nap. I felt a little smug about the nap. Do anxious people nap? No, they do not. Do people have to pee after a 90 minute flight? Well, neither did I.  Which was lucky, because the fasten-seatbelt lights were blinking. The airplane was already in descent. I must have napped the whole flight to Toronto! 

The plane touched down, none too softly. The bumps didn’t make me leak. I was going to get away with this. I was traveling like a normal person. Kind of. Except. I must have packed my special air-travel curse, one I’d perfected in my years of flying monthly to clinical trial appointments at the NIH.  Instead of rolling to the gate, the plane just sat. We waited. And waited. It was announced that there were no free gates. 

I considered defying the blinking fasten-seatbelt lights, and making my way to the restroom while my bladder was still calm, just to be on the safe side, because my bladder can reach full-on urgency at any moment. But I didn’t want to draw any extra attention to myself if it wasn’t strictly necessary. After all, I’d had the good sense to use the airport bathroom before I’d boarded. Not like my MS bladder follows any rules or cares about my good sense.

Our plane finally started moving. As we rolled to our newly assigned gate, my husband sweetly volunteered to wait around outside for our suitcases, freeing me to spring off the plane and sprint directly to the airport restroom unencumbered.  I felt grateful to have such an understanding husband. To make life even easier for me, he volunteered to carry my bulky messenger bag while he waited for our bags. Gentle readers who travel internationally might foresee the flaw in our plan. We did not.

I descended the metal airplane staircase almost like a person who can balance, my fingertips grazing the bannister nonchalantly. The sun came out from beneath a cloud. Which was all it took to kick me out of the realm of the nonchalant. You see, Gentle Reader, MS has messed up my wiring. Overheating, or even the suggestion of overheating, is enough to trigger my MS symptoms. I thought of turning around, of going against the tide of departing passengers who had already been held up, so I could use the airplane restroom. A backward glance confirmed that wasn’t going to happen. I had to go forward, and fast, though not too fast, because…overheating. Most of the passengers stayed behind me by the plane, waiting for their suitcases. I followed the one person ahead of me, a person whose pace made a mockery of my own. Through the glass walls of an empty gate, I could see the sign for the restroom, a little silhouette of a woman in a dress, like me. I could see the restroom door. But the door to the gate itself was locked. Odd. I tried the door the fast passenger had disappeared through. It opened into a hall that ran alongside the empty gate. There was a door to the gate further down the hall. Also locked. Really? This was almost funny. As in, it would be funny later, after I emptied my MS bladder. The perk of having a blog about MS is that every challenge could make an interesting blog post. This post would be hilarious. Right?  

Did I say the gate was inaccessible? That was accurate. In fact, the entire terminal was inaccessible, which I learned as I walked down the hall, trying door after door. At one point, I made eye contact with a lone lady with a mop. I crossed my legs. Bounced meaningfully. Rattled the door. She shook her head. We waved goodbye to each other,  as I had no choice but to keep walking the hall down the length of the entire terminal. There was a window at the end of the hall. I glanced out over a vast stretch of tarmac to a terminal on the other side. Would I have to walk that far? I’d wondered if my husband was getting worried about me. We’d thought we’d only be separated a few minutes. That was when I felt my first little leak. I took a deep breath. It was going to be OK. More than OK. I’d prepared for this. Why else would I be wearing an overnight pad? Over a diaper. I walked along the twists and turns of the route I was on…chose an escalator over an elevator. Walked some more. Finally came upon a stewardess at the foot of a staircase. I asked where I could find a restroom. I said it was an emergency. I have no pride. She said I was close. I’d just have to go through customs first. She walked me up the stairs, to a uniformed gentleman who resembled Idris Elba. My lucky day? Not. 

Gentle readers, I had just met the man of my Terrible Vision. The stand-up man who would block my way to the restroom. And I hadn’t had to travel all the way to China to find him. 

The stewardess explained we had…a problem. I explained, I have MS. I have to pee. Now. And Idris Elba explained, we were in an International airport. I would have to go through customs, like every other international traveler. Then I could pee. 

Oh. 

Customs. 

My husband and I had forgotten about that. When he had kindly unburdened me of my messenger bag, he had inadvertently unburdened me of my passport. Which I was going to need. If I was to get to pee. He had also unburdened me of my back-up overnight pads. Which I was also going to be needing, if he didn’t get there soon. 

I asked Idris Elba if there was any way the nice stewardess could escort me to some bathroom between the airplane and customs. I had passed plenty on my way. 

Idris Elba asked, “Do you want me to lose my job?”

I said, “I do not.” 

And sat right down on the airport floor. Because I did not want to pee right there and then. I figured, sitting might help. 

It did help. 

The passengers from our plane started to arrive. Most of them didn’t cast a glance at my one-person sit-in demonstration against inaccessible airport bathrooms; they might have been in too much of a rush to get to the bathrooms, themselves. I watched them glide their passports across the customs kiosks, then glide through the metal detector. Then disappear. Like that helpful stewardess. 

Idris Elba kept looking over. I hoped and hoped and hoped I wasn’t going to be leaving him a puddle. 

My husband appeared, his face contorted with worry. It took what felt like forever for him to helpfully dig my passport out of my messenger bag, which was overstuffed with unmentionables. And then it took approximately forever and ever for me to figure out how to use the customs kiosk. Idris Elba finally processed my passport himself. As I passed through the metal detector, I could feel the beginnings of a big leak. The restroom was not as close as I wished it to be. But once I finally got there, I felt so lucky to find a free stall. Lucky. That’s how I felt, as I finally relieved myself. Lucky, as I threw out my first soaked diaper since 1969. As I threw out my underwear. And my stockings. Lucky, as I pulled out a fresh adult diaper, a fresh overnight pad, fresh underwear, fresh stockings. 

I was darn near ebullient as I left that restroom. My diaper purchase had paid off! This was a fresh start. 

Never have I seen my husband look as somber as he did when I joined him in the posh Toronto terminal. When he finally spoke, he said, “We haven’t even made it to China yet.” 

I wish I could have told him then what I can tell you now: I would be throwing out dry diapers and dry overnight pads in Beijing, Nanjing, and Shanghai. I wouldn’t be inconveniencing anybody on our overnight flights. 

But I couldn’t know this. And he couldn’t either. That man loves me more than all the pee in China. He is in it for the long haul. Whatever that might be. So we went on. When our son and his partner met us in Beijing, they asked us about our flight. Did we tell them this story? No. We said simply, everything went fine. I was trying to spare my husband’s feelings. He was trying to spare mine.

That was the only moment in the entire trip which truly felt like a defeat. 

Quote

All the Pee in China, part 1

02/07/21: Gentle Reader, I am reposting All the Pee in China, part 1 because I am finally getting the courage to post All the Pee in China, part 2.

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.”

How, indeed.

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.

  • to be continued

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The Greater Good

During a 2012 visit to the National Institutes of Health (NIH), I met a very pleasant young intern who had recently abandoned a career in law to take up a career in medicine, all because he’d wanted to use his talents to make the world a better place. Apparently most of the lawyers he’d met in his former life had been miserable, self-centered creatures.

He hadn’t wanted to end up like them.

So far, the intern had found the people of the NIH to be far better company than the rapacious lawyers he’d fled from. The intern observed that everyone at the NIH was there for the public good, even the patients, people who were willing to undergo trials that may or may not directly benefit them, but which would most certainly benefit others. As the intern put it, the institution was filled with do-gooders, “from the bottom up.”

I did not resent the intern for classifying patients like me as being at “the bottom” of the NIH heap. I deserved that. I myself have made a similar observation about the outstanding qualities of the good people I meet at the NIH, although in my self-serving version, “the bottom” is occupied by the NIH cab drivers —a demographic consisting primarily of highly educated immigrants, like the driver who’d earned a medical degree in his former life back in a war-torn African nation.

I don’t take anyone’s status too seriously, including my own. Status is subject to abrupt change. Things can be going fine, and then along comes a war. Or a disease. There are many paths to the NIH, indeed.

I wanted the good intern to like me. I did not correct his assumption that my primary motivation for participating in the trial for DAC HYP was a selfless one. My actual motivation was anything but selfless. DAC HYP was the only drug I’ve taken that managed to stop the progression of multiple sclerosis (MS). When I’d heard it was being taken off the North American market, I’d panicked. I’d made a few phone calls, and tracked down the doctor whom I’d initially begged to prescribe it off label.  Joining her study at the NIH was the only way I could continue to take a drug with a known benefit.

There hadn’t been any risk involved in joining the study that I hadn’t faced already. There wasn’t even a risk of my being placed in a control group and receiving a placebo. I wasn’t at the NIH to make the world a better place. I was at the NIH to continue to take a better drug.

From what I’ve overheard from other patients at “the bottom” of the NIH barrel, we are all there primarily for our own private good. Did we want our disease cured? Hell, yes. Getting to the NIH meant cutting to the head of the line. No one gets an NIH ID without having struggled for it, including those who arrive in a wheelchair.

Human beings are complex. As for those selfish lawyers the intern was fleeing? Maybe some of those miserable human beings do in fact inadvertently contribute to the greater good while in pursuit of those big fat paychecks. More power to them.

I’d like to imagine that should one of those fat cats one day get sick, and have to claw themselves to “the bottom” of the heap at the NIH, they would make their own contribution to the greater good through their rapacious pursuit of an elusive cure. The intern may think better of his former colleague should he meet that person as his patient. He may think that they have undergone some spirtual transformation. But they will be the same ambitious bastard they always were.

We all contribute to society in some way. Like the intern, I’d rather hang out with people whose positive contributions to the world are deliberate, and not inadvertent. Yet by now I’ve learned that no one’s motivations are as clear as we would like to think.

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Ballad of the Rejected Ballot Applicant

Absentee Ballot Application 1: 

Once it became clear that Covid was going to linger through primary election season, I was grateful to learn that I would not have to break my Covid quarantine to perform this most essential duty. The State of Ohio offers mail-in voting. Easy! Once I printed out my application, I urged my husband to apply as well. I nested our two applications in the same envelope, fully expecting to receive two ballots in return. This is what we received instead: My husband got a ballot. I got a rejection—a check mark in the box next to: no signature

My instant response was one of deep shame. Could I have forgotten to sign my name? I’d been so excited. Had I been too excited, so eager to mail the envelope that I didn’t  notice I hadn’t signed the form? It didn’t seem possible. But it didn’t seem entirely impossible, either. Who was I to call The Hamilton County Board of Elections a liar?  I make mistakes sometimes.

I considered sending a second application form to vote absentee in the primary. But at that point, I didn’t think it likely I’d receive a ballot in time. So I gave up on voting in the primary. 

My shame only increased as I saw footage of people braver than myself enduring long lines in the primaries in Wisconsin and Georgia. Surely some of those voters were also coping with multiple autoimmune diseases, yet they were out there, risking the possibility of Covid. What made me more special than them? Nothing. And what about all those voters before us who had risked their lives, even lost their lives, to exercise their right to vote? 

Missing the primary was bad, even if my preferred Democratic nominees had dropped out of the race by that point anyway. 

Missing the November election would be inexcusable.

Absentee Ballot Application 2: 

I downloaded the application for an absentee ballot for November’s election. This time, I was going to do it right. I made sure I signed the form. I made sure I took a picture of the form,  signature and all. 

And this time I got the same response as before—a check mark in the box next to: no signature

Gentle reader, you might be looking at my signature, and conceding that the Hamilton County Board of Elections may have a point. I know. I know. My husband describes my signature is “a bit whack.” When I was a teenager, folks used to look at that very same signature and tell me I would grow up to be a doctor. Would you take the right to vote away from a doctor? Then why take it away from her patient?


I left a possibly indignant message on the Hamilton County Board of Elections answering machine, and then I went ahead and printed out, filled out, and photographed…

Absentee Ballot Application 3: 

A few days after I mailed my third application for an absentee ballot from the Hamilton County Board of Elections, I received a phone call from a kind sounding lady, who was responding to my (possibly less than kind?) phone message. She dredged up my paperwork and the original signature they had on file, and described it to me as having a loop and a few small bumps, and then a big bump and then a line, as opposed to my most recent signature, which she described as having a bump, and then another bump, and then a tail. 

Gentle Readers, I played my disability card. I explained I have multiple sclerosis, a degenerative disabling disease. My signature was likely to have deteriorated over time. She recommended I send another application, and to add her initials to the outside of the envelope this time. 

The truth is, I remember the first time I signed my name to a vote in Hamilton County. It was many years—and perhaps as many brain lesions ago, but I remember it like it was yesterday, because it was a big deal to me. Voting is always a big deal to me. I remember I signed my name very slowly, and very deliberately, summoning up each and every letter as neatly as I could. I gave it all I got, gussied up my signature in high heels for the government. And I remember a flash of anxiety…would I ever be able to duplicate this signature? Had I made the wrong move? Gentle Reader, I had made the wrong move entirely.  

A few days later, I received an Authorization to Update Signature on Registration Record from the Hamilton County Board of Elections. The form contained two more opportunities to affix my signature. I tried to keep the two signatures as similar to each other as possible, so as to keep them from cancelling each other out. 

When I mailed that form, I thought I’d made my case. I kind of figured I’d get a ballot back. No such luck. 

Last week, I felt a flutter of anxiety as I watched Michelle Obama lean toward the camera and exhort us to persist. 

“We’ve got to request our mail-in ballots right now, tonight, and send them back immediately and follow up to make sure they’re received.”

Tonight, I downloaded: 

Absentee Ballot Application 4. 

I signed my ballot application. I took a picture of it. I put two stamps on the envelope for good measure. (And for the good of the postal service, which is in just as much peril as our right to vote.)

And then I wrote this blog post.  I asked my husband what he thought of it. He responded, “If you want to make your argument more forceful, I would say, do not include your signature.” 

“But this is my signature!” I protested. 

Here’s the problem: if I were to try to reproduce my signature in high heels, I would be likely to fail. Would I scrawl sensible heels one time, and nine inch heels the next? My natural signature is mildly inconsistent. I fear a fancified signature would be madly inconsistent. 

Besides, don’t you think my current signature goes nicely with the wavy logo on the Hamilton County Board of Elections? Could maybe, this time, we all just get along and go with the flow?

Maybe not. My current signature doesn’t look like my signature in Absentee Ballot Application 2! 

If someone is motivated to reject it, they will reject it. Maybe not now.

Maybe on Election Day. 

Should I just give up? Vote in person? I have never had my signature questioned in person. People are nicer in person, don’t you think?

Wish me luck. Wish the fate of our democracy luck.

Racism is an Auto-Immune Disease


Anti-racism advocate Jane Elliot says, “The number one freedom that white people have in America, is the freedom to remain totally ignorant about the injustice committed against those who are other than white.”

I can’t see how even most lily white reader can remain totally ignorant of police brutality in this country since the era of body cams and cell phones. And yet police brutality persists. Let’s take ignorance off the table. Something more intentional is going on.


Gentle Reader, since the murder of George Floyd under the knee of a Minneapolis police officer, I have been unable to fill this space with the posts you’ve come to expect, in which Ms. Lab Rat finds a new way to confront some problem with her ever unruly immune system, shares her discovery, and exhorts you to stay well.


I don’t want this page to be a refuge from the news that’s coming in from protests all over the country, images of people who have had enough of police brutality, and images of the police responding with more brutality. (Have you noticed how no funds have been spared to boost our police force with a seemingly endless supply of body armor, rubber bullets and pepper spray? Wait… is this the same country that can’t afford to outfit our health care workers with PPEs or to provide them with hazard pay?)


Our tax dollars are clearly not for the preservation of human life, but for the preservation of white supremacy.


The police in my city have taken down the American flag, and replaced it with a Thin Blue Line flag. In my mind, that is an unpatriotic action. But maybe the America I believe in was a white-washed America, an America that didn’t much acknowledge it was built on genocide and slavery and exploitation and extraction and domination and never gave a damn about black lives, thank you very much.


Darn it, I’m doing exactly what I was hoping to not do. I’m reacting. Multiple Sclerosis is a harsh teacher; this disease has taught me the hard way that when I react to a negative stimulus, I hurt myself. I’ve been working to be less reactive… and more responsive. What does that mean, exactly? To be responsive is to look directly at negative stimulus, and step back. Identify it. Identify how it makes you feel.


I’ve stepped back. I’ll tell you how I feel; I feel sick. It’s a sick, sick country that prefers to handcuff hundreds of protestors than to handcuff four bad caps.


Over the years of taming my MS, I’ve learned to take the long view on a problem. Take the problem of anti-maskers demanding their rights to freely spread Covid wherever they feel like; I’ve managed to take the long view and not get so mad at the anti-maskers that I wish for them to suffer the consequence of their actions and contract Covid themselves. I’m fully aware that if my wish were to come true, the anti-maskers could spread it to undeserving people, such as those underfunded health care workers I was talking about. For a fable-quality twist of fate, the Covid could spread to the ill-wisher: me.

The bad news about Covid is also the good news; we are all interconnected.

I’d have to take an incredibly long view to see any end to racism, which isn’t going to go away at the end of this news cycle. Clearly, it has not gotten fixed; according to Professor Kehinde Andrews, it will never get fixed within the White Supremacist system, the only system any of us has ever known. Andrews says, “Because the symptoms of racism are deadly, we often focus on these symptoms. Just like with anything, if you treat the symptoms and you don’t treat the disease, you’re still going to be sick. The disease is capitalism.”


Gentle reader, stay safe. In these frightening times, do your best to live in power, and not in fear. Let’s all work for a society that is fair, just, equal, and loving. For those of you who are also seek to learn how to respond, rather than react, consult this excellent talk by Tara Brach. The more we all practice mindfulness meditation, the more we activate the prefrontal cortex, the part of our brain that operates on a basis of morality.

Be well! Be generous with the resources you have gained. We are all connected.

Don’t Judge a Book by Its Cover: Ms Lab Rat’s Review of Ketotarian: The (Mostly) Plant-Based Plan to Burn Fat, Boost Your Energy, Crush Your Cravings, and Calm Inflammation

On Friday night, Dawn Elise posted a book recommendation on the Ms Lab Rat comment page. Because I like that gentle reader’s taste in authors, I immediately downloaded her recommendation on my Kindle without getting worked up about the title or giving any attention to the cover photo. If I had so much as glimpsed at the image of the egg centered on the book’s cover, I might have passed over Ketotarian. I am allergic to eggs, and I have not had all that much luck with Keto. What could be in it for me?

I found the narrative voice of the first pages so compelling that I read straight through to the recipe section. No regrets. Who cares if you are up half the night and must sleep in ’til 9 am? I’ll give myself a pass; we’re in Covid-19 Quarantine.


What I like most about this book is that its mission is not to proselytize, but to inform and entertain. Cole is honest about the convolutions of his personal food journey. Through his struggles he has gained the wisdom to refrain from pressuring his reader to follow him in lockstep. For example, he provides Instant Pot recipes, but doesn’t urge you to go out and buy an Instant Pot, or worse, to buy a particular model of Instant Pot (a habit of certain medical professionals-slash-food celebrities that I, for one, find galling.)


Cole covers an impressive span of topics; the index alone makes for fascinating reading. These are 38 entries under H: from hair dyes (47) to hypothalamic-pituitary-thyroid (HPT) axis (134). And while we are on the subject of thyroids, let’s go to page 134. For there I discovered a confirmation of why Keto dieting hasn’t worked for me: “…some people with thyroid problems don’t do very well with fasting, making intermittent fasting a case-by-case tool for people with thyroid issues.”

Cole explains, “The queen of all hormones impacts every single cell of your awesomely designed body. If your thyroid isn’t working well, nothing is. The crazy thing about thyroid hormone problems is that there are many different reasons for them…There are autoimmune thyroid problems like Hashimoto’s disease, thyroid conversion issues like low T3 syndrome; thyroid resistance, which is similar to insulin resistance; and thyroid problems that are secondary to brain-thyroid axis dysfunction.”

I have known I have hypothyroid for thirty years. But have any of my conventional medical practitioners told me I have Hashimoto’s? No. I’m not sure they knew, themselves. I had to go to a doctor who practices functional medicine to find out.

Cole makes a convincing case that western medical schools have dropped the ball on educating doctors about nutrition. “Expecting health guidance from mainstream medicine is akin to getting gardening advice from a mechanic. You can’t expect someone who wasn’t properly trained in a field to give sound advice. Brilliant physicians in the mainstream model of care are trained to diagnose a disease and match it with a corresponding pharmaceutical drug. This medicinal matching game works sometimes, but often it leaves the patient with nothing but a growing prescription list and growing health problems.”

I’m really grateful to Cole for giving me such an in-depth research fueled assessment of the diet he’s had the most success with personally, and for giving me a pass if I don’t think it will work for me. I haven’t had a chance yet to try any of the recipes, but I’ll be sure to update on my Goodreads Page
when I do.

Big News

I just got a call from Dr. A, the neurologist who follows me when I participate in clinical trials at the NIH. She is always a delightful conversationalist. This time, topics ranged from the music of poet Joy Harjo to the mindfulness meditation of Dan Harris to the benefits of exercise. She asked about my Covid-19 quarantine routine, which includes yoga, pilates, qigong, breath work, short walks—and cold showers. Dr. A is one of the toughest ladies I know. But even she didn’t warm to the notion of a cold shower. Instead, she deftly switched topics to the motive for her call — would I be interested in participating in a new NIH study on the effects of diet on MS?


Would I? Of course I would.


As long term readers of this blog already know, this diet study would not be my first rodeo. I had participated in a trial conducted by Dr. Wahls which compares the efficacy of her eponymous diet to that of The Swank Diet. If you have a grain of common sense, you will not be shocked to learn that I found her study to be biased. I joined it in good faith, expressed a willingness to be assigned to either diet, and pressed on when I was assigned the less desirable Swank Diet. I kept scrupulous record of every food I ate, down to the last teaspoon. The low fat Swank Diet may have helped many people with MS, but it didn’t help me. On the last day of the study, I broke my fast with an avocado. Yum! Fat! I’ve been back to eating fats—healthy fats—ever since.


As soon I had control of my own diet back, I switched to the Wahls Diet I’d been waiting for—and I found the recipes lacking. This was a few years ago; I know Dr. Wahls has been tinkering with her diet every day since then. At the time I felt like her focus was entirely on feeding the brain, and not on delighting the palate. I despaired of convincing my family to adopt the diet along with me. While gripped with anxiety about facing a lifetime of stoic meals, I stumbled on this happy website, which is run by two unpretentious women with five autoimmune diseases between them. They call their diet the AutoImmune Protocol (AIP), and that’s the diet my husband and I have merrily adopted. I asked Dr. A if I could remain on AIP throughout the study. She asked a few questions about it to determine if it could fit within the framework of the diet the NIH would want me to adopt. At this point, she thinks it could work. I’m certainly not willing to go back to a SAD Diet (Standard American Diet) to provide a before and after. I have learned my lesson and will never again martyr my diet for science. I will, however, happily chart my progress teaspoon by the teaspoon, if it will help others make well informed decisions about changes they can implement to optimize their immune system.


Diet should never be about cults of personality. An impartial government study of diet and immunity will be beneficial to all of us with multiple sclerosis, whether our current diet is Swank, Wahls, or the sweet, generic-brand AIP. A diet study came out earlier this month which shows AIP can change gene expression. That’s big news—proof that diagnosis isn’t destiny.

This new NIH diet study is not yet official; it is still just a twinkle in a researcher’s eye. It won’t happen if our researchers can’t find NIH study participants willing to document our food intake (tedious) and swab at least one poop sample (odious). But if I know my NIH researchers, and my fellow lab rats, we will be up for the challenge.


In my experience so far, diet adjustments can be arduous and imprecise and emotional and sadly not entirely curative. I see them as necessary, but not sufficient. A new diet study, if done well, can help all of us struggling through autoimmune disease to direct our efforts toward our best possible outcome, whatever that might be.

Gentle Reader, may you be happy. Stay well!

Glimpses of Gratitude, Covid-19 Style

The other day, I rolled out of bed pretty late, because I just couldn’t stop listening to Sugar Calling, the new Cheryl Strayed podcast. I heard a common thread running through Cheryl’s conversations with Alice Walker, “Whatever We Have, We Have to Work With It,” Judy Blume, “A Terrible Thing Is Happening, but the World Goes On,” and Pico Iyer, “Joyful Participation in a World of Sorrows.” When I finally meandered downstairs to make my ugly happy smoothie (cooked beet, coconut milk, ginger, five spice, spinach, and a few drops of rosewater) my husband presented me with a hand-addressed envelope out of our pile of stalemail—mail that had been untouched for 24 hours since our postal worker dropped it in the slot.
I opened a gorgeous card with a Japanese aesthetic; a collage created with scraps of handmade paper by our friend, the artist Tricia Bath. She’d incorporated a 13th Century quote from Rumi, one that resonated with the thoughts of the contemporary writers I’d heard on the podcast that morning, “Be grateful for all you receive, good and bad alike, for it may be a gift.”
Gentle Reader, I don’t blame you if you roll your eyes over another Rumi quote. Stay with me. All of us have lost something while living through this pandemic. You may assume that if I’m still blithely quoting Rumi, I haven’t yet lost enough. So far, Covid-19 has been less of a challenge for me than it has for those people who have lost their jobs, their loved ones, or their health—or for those people who have kept their jobs, and have had to take on the additional jobs previously performed by their nannies, their children’s teachers, their parent’s caregivers.
Unlike many, I am not overburdened. I am not lonely. I am not grieving. I am not bored. I am not deprived of touch or deprived of keeping in touch—I still have telephone service and wi-fi. All of this is to say, Covid-19 is a catastrophe on a grand scale, and it would be irresponsible for me, the most peripheral of its victims, to dismiss it with a platitude of gratitude.
Except.
Gratitude is not a platitude. Whenever we feel lost, gratitude is our road home.

My father’s roadside signs in Wallingford, CT

When my mom texted our far-flung family with pictures of homemade sign my father had created and posted by the side of their road, the challenge was on. The front of my house is premium real estate for thank you signs. Workers drive by on their way to the VA, Children’s Hospital, and university hospital.

I’d wanted to make signs that look uplifting, but I have crappy eye hand coordination and no visual aptitude; the best I could do was make signs that look kind of Gothic and creepy and desperate. I’m sorry about that.

Without exception, every day I encounter a gift someone has made in response to this Covid-19 catastrophe. If nothing else, I receive the gift of my husband’s delicious cooking, all made within the confines of my many allergies and sensitivities (no dairy, wheat, gluten, nightshades, egg, peanut, walnut, strawberry, mango…etc.)

On my worst Covid-19 day so far, the day of my comeuppance, I came back home laden with guilt and shame, only to be presented with a stalemail package that was unusually light; a gift from my friend, the singer, actress, and writer Barb Timmons. When I opened the package, I discovered this lovely note and origami figure.

Is it a coincidence that both of the stalemail gifts I am mentioning owe a debt to Japanese design? I think not. Mainstream white America has defined itself more by avarice than by adversity, making us less aware of the beauty, power and dignity we all do in fact possess in times of oppression and catastrophe.

I know very little of Japanese culture, but one day, when I had a few hours to spare between appointments at the NIH, I took the opportunity to visit an exhibit at the Smithsonian titled, “The Art of Gaman.” Gaman means “to bear the seemingly unbearable with patience and dignity.” The exhibit featured arts and crafts created by the internees in the Japanese American concentration camps during World War II. These objects were made by average citizens without any trained artistic skills. They were dazzling. They gave me the strength to persevere through whatever challenges awaited me back at the NIH that day.

We are not weakened by catastrophe. We are strengthened. Maybe not right away, but eventually. Gentle Reader, today is Mother’s Day. If you have not received a gift today, indulge yourself by giving one.

I am grateful for your time. Be well.

Covid-19 Comeuppance

A true friend in the Time of Covid-19 is the friend who keeps track of your Day 14’s. The friend who texts at 9:01 am to ask, “Is this the anniversary? Is everything OK?” 

Today was a Day 14 for me…y’all know what I’m mean about a Day 14? It’s the 14th day after an event that didn’t used to have the potential to kill you, but does now. Highlights from my Day 14 Calendar include March 5 (14 days after a party conversation with someone returning from Covid-struck Italy), March 17 (14 days after an unwanted kiss from a nursing home denizen), and March 20 (14 days after exposure to a medical receptionist bronzed from her recent cruise.) 

Gentle Reader, you may have noticed all my aforementioned Day 14’s took place in March; I was very much an early adopter to the whole stay-at-home physical distancing thing. Up until now, my blog could be read as a great big Covid-19 Told ‘Ya So!

That would be a false impression. 

Two weeks ago, I had a painful comeuppance. I’d been congratulating myself on making what can only be considered a drastic lifestyle change; I’d gone from visiting some form of medical facility on an average of 3.5 times per week to preparing to stay the heck away from physicians and hospitals for the foreseeable future. 

I had downloaded my telemedicine app, accumulated the maximum refills on all my prescriptions, ditched the MS medication that was compromising my immunity, ditched the daily catheterizations that were leading to relentless UTIs. I was so done with being a part-time patient. So what if I had three auto-immune diseases? I’d been learning to cope with disease through a magical combination of an autoimmune diet, yoga, qi gong, and tai chi. I was ready to go physician-free! 

It did not occur to me that I was continuing to engage in a reckless practice that had, in the last six months, landed me once in the optician’s office and once in the ER.

You know the saying: fool me once, shame on you, fool me twice, shame on me? There is no saying for fool me three times, because the thrice-fooled are dead fools. Except, apparently, fools like me.

On the morning of April 16, I was feeling Covid-19 savvy for actually opening a new set of daily contact lenses instead of reusing the ones I’d worn the day before. The last time I’d seen my optician, she’d insisted that daily lenses weren’t made of the same material as the little slips of plastic that used to last me over a year. She’d commiserated with me about all the darn packaging waste, but promised that if I returned the spent packaging to her office, her office would forward it to the manufacturer, which claimed to have an environmentally sensitive plan for re-use. I dropped what would be my last two empty contact lens cases into the cloth storage bag within my bedside dresser, and proceeded to go about my day. I didn’t get very far before the inciting incident occurred. I was back in the bathroom, about to brush my teeth, when my husband called out something funny from his study; I laughed, then rubbed my eye. Like you are not supposed to do during Covid-19, and this is yet another reason why—out popped one very jagged half of the daily contact lens I had recently inserted. 

I poked around for the other half. Washed my hands. Poked around some more. Washed some more. Squirted contact lens solution. Rolled my eyes in front of the mirror. Rolled my eyes in front of my “eye-phone”—taking the most grotesque selfies imaginable. I called a nurse for any tips. The nurse’s tip: stay away from the optician. Stay away from the ER. Covid-19 likes to travel on the eyes. I called my primary care physician. She advised me to recruit my husband’s help. 

My husband is an upright guy. The man would chew glass for me. And I tell you…he’d probably prefer to chew glass than to mess around with searching for a contact lens shard in my eye. It was just too—nasty. Nonetheless, he stoically entered a ghastly new discovery phase in our marriage as he positioned himself above my head and squirted a continuous stream of contact lens fluid into my eye. To no avail. Our romantic New Year’s Eve agreement had been that we stay away from the ER in 2020. And now this man was suggesting we go to the ER. I decided to give it another round on my own. 

By 3pm, I’d had enough. My eyeball felt ragged. I hated letting down my primary care doctor, and my nurse. I hated endangering my husband. I hated endangering myself. But if this contact lens shard wasn’t showing up, an eye infection would be on the way. I countered my husband’s offer to drive me to the ER with a proposal that he drive me to our local optician. He liked that idea much better. It would be safer and cheaper. There. I’d managed to make one good decision to partially redeem my irredeemable self.  When I called the optician’s office, I recognized the voice on the other end as a technician I rather liked. Suddenly I no longer felt as though I were entering a realm of certain death, because I didn’t want to imagine that likeable guy as being in danger. 

My husband got me to the building five minutes after I got off the call. The technician was standing at the door, wearing a mask and gloves. It was strange to walk into an empty waiting room. I was the only patient in the building. In less than five minutes, the doctor was able to extract the shard that had eluded me for hours. The darn thing had been tucked underneath my eye at approximately the 7pm position. The doctor recommended I stop using contact lenses for the duration of Covid-19. The experience was sufficiently traumatic, so I’m taking his advice. 

My new Covid-19 look is a mask…and fogged up glasses. 

Stay well, Gentle Reader. May you and your loved ones keep your Covid-19 Calendars clear!