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. 

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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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