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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People with MS Have An Important Role to Play in The Great Big COVID-19 Experiment.

Knowledge is power. The more we know about COVID-19, the more powerful we will be. This is why we spend eight to twelve hours a day checking our iPhones.. .to possibly learn twenty two seconds worth of relevant information that might SAVE OUR VERY LIVES. Or, at any rate, to learn another snippet about “The Tiger King.”

I thought I’d pass along a bit of relevant information I’ve gleaned , because it concerns my peeps, the folks with MS. Gentle Readers without MS…stay with me. I’ll be passing along a few bits of relevant information for you, too.

I’ve been taking the threat of COVID-19 extra seriously because I’m in that subgroup that’s supposed to be afraid… very afraid: I am one of the Immune Compromised. Like many of the insured with MS, I’ve been taking very expensive medication that I’ve since read may have made me fractionally more immune compromised in the face of COVID-19. Had I been on a more effective MS medication, I may have been significantly more immune compromised. So I guess I’m glad I was on a dud of a medication? Mostly, I feel those of us with MS and medical insurance have been played for suckers to generate profits.

Anyway, I’m off my meds. Good riddance. Except. I am now experiencing weird visual symptoms that may (or may not) have been prevented had I continued with my lame MS drug. There is no way to know if I’m having a relapse without going to a doctor, and who wants to do that? I don’t have a control-group-twin sister who is still on Tecfidera.

Yesterday I read about a tool more ethical than a control-group twin sister— a global initiative that is amassing data to help people with MS and other demyelinating diseases of the central nervous system to make more informed decisions about our risks related to COVID-19. It’s a database called COViMS.

We neuro-compromised don’t have to do much to participate in this database. We just have to a) catch COVID-19, b) get tested (good luck with that!) and c) tell our doctors to use this link to fill out a brief report, though “only after a minimum of 7 days and sufficient time has passed to observe the disease…through resolution of acute illness or death.”

The form takes ten minutes to fill out, but that’s not our problem; that’s our doctor’s problem. We will either be recovered or dead.

I am always looking for a way to be useful after I am dead. (I’m not too keen on being useful during this all-too-brief period before I am dead.) For years, I’ve been wanting my dead body turned into some form of compost. Seriously, that would be a dream come true. But if that dream is not to be, having my COVID-19 struggle recorded in a searchable database will have to do.

There is, however, a small but distinct possibility that my COVID-19 struggle has already come and gone and is only now getting documented in this very small database known as my blog. I was wrapping up a session of qi gong in our back yard during an unseasonably warm and sunny day when I suddenly experienced an acute pain in my lungs. It felt like I’d inhaled asbestos mixed with the smoke from a thousand cigarettes mixed with a thousand tiny daggers. There had been a brief regrettable period in my youth when I was a two and a half pack a day smoker. My lungs felt worse than they did then. And felt worse than they did through my childhood bouts of pneumonia. There was no database to consult about my chances of surviving COVID-19. As far as I knew, being Immune Compromised meant I was about to be a goner.

Operating under this speculation, I did a few embarrassing things.

I received a text from a friend of mine, who was anticipating the arrival of three grown children from New York. She had just discovered the toilet paper shortage was real. I replied by bequeathing her our precious Costco sized trove of toilet paper, without checking in with my husband first.

I then texted my son that I was proud of him. Or that I loved him. Or that he should do good in the world. Something that could have raised an alarm.

I then called my parents. They told me to hang up and call a doctor. So I hung up and tried for a telemedicine consult through my insurance company. In order to qualify for a telemedicine consult, I had to fill out a brief questionnaire about my health status and symptoms. The questionnaire asked if I were immune compromised. I was immediately patched through.

The doctor on the other end of the telemedicine consult was a young woman who looked and sounded ten times sicker than I felt. As she asked me questions, her toddler toddled into the background, asking questions of her invisible patient in her private toddler language. The doctor informed me that I would not qualify for the COVID-19 tests in my area. She advised me to get some rest. She told me that I was breathing more freely than a patient she’d be concerned about. Feel better, she said. Feel better, I said. The toddler said something in her private toddler language. The exchange cheered me up.

I realized that even though I have MS, and had inexplicably burning lungs, that didn’t necessarily mean I had COVID-19. And even if I did have COVID-19, it was not necessarily inevitable that I was about to die. Maybe there was a chance I could live through COVID-19. At the time, there was no database to consult. Instead, I grated ginger into my tea and I rubbed tea tree oil onto my chest and I did a round of qi gong with Jeff Chand on You Tube and I consulted with my body and my breath. Within a few hours, I was updating my parents that my lungs had stopped hurting so badly. I received a text that my friend would not be needing my toilet paper, after all. I received no reply whatsoever to my text to my son; clearly, I had not freaked him out.

I went to bed with my lungs aching, but not too badly. I woke up barely feeling my lungs at all. In the two weeks since then, I’ve had one other inexplicable scare wherein my lungs hurt severely for a few hours, but mostly, my lungs have been serving me quite well. How well? A few of my college friends talked me into trying Wim Hof’s guided breath meditation on YouTube. I learned I can hold my breath for two minutes, a super-power I would have loved to have known I was capable of back in 1972 or so, when I was watching a Batman and Robin episode in which the daring duo was trapped in a room with rising water. There isn’t much we can control during this COVID-19 crisis; controlling the breath has become ever more appealing.

My friend Monica also has MS and has also had a COVID-19 scare, although we didn’t know it at the time. She announced her symptoms as we sat in a sun-drenched lobby that looked like it belonged to an upscale hotel and not a Neuroscience Center. We’d all just finished what I announced would be my final MS yoga class for the nonce…I was at that point feeling a bit apologetic about my freakish instance that COVID-19 could be on its way. Our friend Kim was sipping the kale and blueberry smoothie we’d recommended. Monica had abstained from ordering a smoothie; she explained she was recovering from battling a freakish bought of diarrhea, and was still experiencing the strangest side effect—she seemed to have lost her sense of smell. None of us yet knew these were symptoms of COVID-19. I would miss only one MS yoga class before the hospital finally cancelled its sessions. Since then, I’ve been hosting the MS yoga sessions on Zoom.

At the end of the first Zoom yoga session, Monica and I were the last two participants left on the screen. She told me she was looking forward to the COVID-19 antibody test. Wouldn’t it be cool if we’d already had the virus, and could just relax? I countered that since COVID-19 was a novel virus, we had yet to learn how effective antibodies would be, and for how long. Today on NPR I learned that those antibody tests we’ve been looking forward to do are actually riddled with false positives. It’s still too early to relax.

Even so, the unique challenge we all face is that we have to relax…at least enough to keep ourselves from developing a harmful immune response should we encounter COVID-19. And we have to stay vigilant. At least enough to keep the virus from getting to us in the first place. It’s a tricky balancing act. Those of us with autoimmune disease are uniquely positioned to have already experienced the loss of control the rest of you are now experiencing. It’s not easy to be calm in the face of imminent danger. But it is imperative. The immune component of the disease opens up an opportunity for all of us to take back some control of our health by treating ourselves well.

Gentle Reader, what have you been doing to relax?