I feel like I’m not supposed to say this, but I liked 2021.
Yeah, I know a lot of it still sucked. I miss my Nova Scotia nieces and I would give up Miss Vickies forever if it meant I could feel safe getting on a plane for a beach vacay. But in 2021 I got to go to Gord and Jen’s wedding. I ate moules and frites on the patio at Le P, I sipped lattes with friends at Ezra’s. Manicures felt like miracles and hugs brought me to my knees. Whatever I took for granted as ordinary in 2019, felt sacred in 2021.
I also got to experience the legitimately exceptional this year. Fashion Dis—a television show about beauty and disability, a show I co-created and host—was filmed, and is coming to the Canadian small screen in February.
But what I’m most grateful for from 2021 are the changes to my MS. After 21 years with this disease, changes are almost always a bad thing. I’m still rocking a rollator, and I definitely had to be picked up after I fell sideways into my parents’ Christmas tree; but, with the help of a neurostimulation device and intensive physio, I’ve had changes to my MS this year that have been, frankly, exhilarating.
Fighting MS, tho?
Every day (okay, not when it’s minus ten, or when it snows, or when the jerks on Huron haven’t cleared their damn sidewalks), I do a timed walk around the block. For six months I’ve been seeing my walk times consistently improve, and it feels like, I don’t know. Heroin? I’ve never tried heroin, but I hear it’s potent shit. And the high of shaving time off my walk is pretty freaking addictive.
Of course, it’s complicated, and just like heroin, there’s a downside to my intoxication. The high I allow myself to feel over any health gains is directly connected to the anxiety, panic, or straight up agony I feel the second those gains feel threatened.
Par exemple, today when it took me 14 minutes and 9 seconds to cover the block—a full 2 minutes slower than my personal best and almost a minute slower than last month’s average—I felt tempted to spiral. I’ve had a string of bad MS days, and I started thinking about how there are only two days left in December, and this is the first month since July that I haven’t clocked a new personal best. Is this the comedown already? Time to sober up and face the beginning of the end of my last best hope?
I know I’m overreacting. I don’t want to always be bracing myself for shit to get worse, but at the end of the day (and let’s face it, the fucking start of the day), MS is a chronic progressive disease.
Chronic = forever. Progressive = it gets worse.
(Happy New Year!)
While the problem with heroin is clear, what’s not so obvious is the downside to allowing any of my recovery to dictate my sense of well-being. I know my improvement is good news, that it’s worth celebrating, that it’s worth shouting from the rooftops, but I need to slow my roll, because I also know how temporary, how fleeting and fragile my physical strength can be. I realize that (even if I haven’t been able to put this wisdom into practice yet), my happiness cannot be tied to the state of my MS, even when my MS is doing better.
My goals for 2022 are big and small. I want to travel with The Banker as soon as it feels safe to do so. I hope to film a second season of Fashion Dis. I want to finish writing the book I’ve barely started. I want to sip mimosas on patios with people I love, snuggle with Tilly, reorganize my closet. Creativity and connection are what fill me up and give me purpose. These are completely achievable with or without fast walking, slow walking, or even no walking legs. If my goal is to thrive in 2022, this is what thriving looks like for me, even with MS.
Obviously, I still have health goals. MS goals. I can’t pretend I don’t desperately want to continue getting stronger. The resolution my heart and guts want to make—the one I can feel deep in my stomach, that on face value seems noble and wise and practically anyone would encourage, is to keep improving my mobility—to walk faster and be stronger in 2022; in short, to keep fighting MS.
Desperation is a terrible foundation for goals.
I spend a lot of time and energy trying to stay ambulatory, and I’m not for a second going to stop pursuing this. (I mean, maybe a second. This life is exhausting.) But I’ve spent just as much time and energy trying to come to terms with the reality that I might not always be so ambulatory. Making room for the possibility that all roads don’t lead to total paralysis feels like taking back the bad boyfriend who promises this time will be different.
Fighting MS is a losing battle, and I am not a loser. The goal I need to set for 2022 is: to do my best. As a not-at-all-sporty indoor-girl, I’ve received my share of patronizing participation ribbons over the years. But maybe there’s something worthwhile about recognizing our efforts. Maybe we do deserve a prize just for showing up. Showing up can be harder than it looks.
In 2022, I want to take a more neutral approach to how my body moves. I want to remind myself, or maybe even convince myself, that walking faster or stronger is a nice-to-have, but it cannot be a need-to-have; a standard that sets the bar for my overall happiness. My success or failure, my joy or sorrow, cannot be measured in seconds and steps.
I’m not ready to put down my stopwatch and quit measuring my progress. I will forge ahead, PoNS in mouth, doing my utmost to give my body its best shot. But, my goal for 2022 is to get off this rollercoaster. Instead of being overcome with joy when I see improvements, I will politely and calmly thank myself, not for setting new records, but for my commitment to myself. When shit goes left, instead of assuming worst case scenarios, I’ll thank myself twice for showing up and for doing my best. The rest is out of my hands. And my legs.
Twenty four hours after finishing this post, and still a day to go before the new year, I clock a new personal best: 11 minutes, 58 seconds. I take a deep breath and try not to fall off the wagon as my resolve to remain neutral is already being tested. When I examine my feelings though, I realize it’s not joy I’m trying to subdue. What I actually feel is relief. I’m on the right path. I just need to keep going.
Happy New Year, Trippers. May you do your best in 2022.
PoNS review: the good and the gutting news about a new treatment for MS progression
My trial with a new treatment for progressive MS using the PoNS device ended a few weeks ago. I’ve been late writing this review because a) I was busy filming a new tv show, and b) I’ve been waiting for some answers from Helius, the makers of the device. Okay, the delay is mostly because I’ve been waiting to hear from Helius, but get used to me casually mentioning that I have a new show coming that features the bad-assery of the disability community because omg you guys, I have a show.
But first, my PoNS review.
It’s been a minute, so I’ll remind you that PoNS is a portable neuro-stimulation device that sits on your tongue and tries to rewire your brain when MS has messed with your neural pathways. The hope is that with the magic of neuroplasticity you can retrain your brain to walk and balance better. For more deets check my original post.
And now the PoNS review you’ve been waiting for: a diary of my 99 days in the research study and a sneak peek, anecdotal, unauthorized spoiler of my results before the science–which you should definitely read–gets published.
My PoNS journey is being managed by Toronto’s Venn Med Clinic. It’s my first day and I’m feeling hopeful despite myself. I hit “publish” on a blog about the trial before heading out. Helius sees my post right away. (Is PoNS a cult? Am I being watched?) I know this because as soon as I arrive at the clinic I meet Christie, who will be coaching me throughout this journey, and learn that Helius has sent an SOS instructing her to tell me that what I’d said in my blog was wrong. I do not, in fact, get to keep the PoNS device once the study has ended.
The rest of my care team includes Maria, a student, and Dr. Demien, who graciously lets everyone call him Daniel, and patiently answers my 1000 Qs, most of which are some version of “Is this really gonna help?”
For the next two weeks, I’ll spend every afternoon at the clinic, doing targeted rehab, after which appointments will drop to weekly and I’ll be required to do an hour of physio a day, on my own, for 12 weeks. This feels like a lot. Sort of. Because, how much can really change in three and a half months? 99 days is basically the lifespan of my mascara (note to self: replace your mascara), and the goal of this trial is to undo two decades of brain damage. And now it’s 98 days because we don’t actually use the device on day one. Day one is all about paperwork and intake evaluations.
The stats: my 25-foot timed walk takes 14 seconds with my rollator, and 24 seconds with a cane.
The diagnosis: slow af, but still walking.
My first day using the PoNS. The mouthpiece is made of nickel and gold (fancy) and I’m asked if I’m allergic. This feels like a Q that should have been asked weeks ago, since anaphylaxis is kind of a dealbreaker. Fortunately, I’m only allergic to nuts, which I don’t feel too sad about, because nuts might improve heart health but they can’t do anything for my legs.
The mouthpiece is attached to a hard plastic device that sits around the neck. Rehab sessions are divided into 20 minute intervals which are counted down on a display screen that I can’t see because I don’t have eyes in the back of my head. I recognize that part of the reason PoNS is big bucks is because we’re paying for research and development; so I make another mental note to tell Helius to throw a little more R into the D, as the hard to reach on/off buttons might be tricky for anyone with dexterity issues.
When I ask more questions about the mouthpiece, Christie casually mentions that it has to be replaced every three months to the tune of $500. Apparently Health Canada requires electrical devices that go in the mouth to have an expiry date. I probe some more. My electric toothbrush recommends I replace its mouthpiece every three months too, but I’ve been known to test these limits. Couldn’t I do the same with the PoNS?
No. The answer is no. Whether you use your mouthpiece for ten hours or two thousand, after 99 days, it’s programmed to die.
I turn on the mouthpiece and it feels vaguely like champagne bubbles on my tongue. I briefly wonder if I could just hack this process with real champagne, since that would be cheaper.
I’m still getting to know my PoNS (well, my loaner), and I ask if the battery life is similar to the suckitude of my iPhone. Christie throws me another btdubs–the device (the thing that sits around your neck that the mouthpiece plugs into)–has to be replaced every 3 years, when it Inspector Gadget-style self-destructs.
FML. Can PoNS get any more expensive? (Spoiler: It can.)
I try to put my crustiness about the cost aside. I’m introduced to electrically stimulated acupuncture, which proves to be an effective distraction. Electroacupuncture is like regular acupuncture but painful. Ish. It’s more uncomfortable than awful, and anyway, I don’t complain because I’m willing to do whatever it takes to make this shit work. (This shit: my walking.)
The acupuncture requires access to much of the right side of my exposed body which introduces a new layer of discomfort. I make yet another mental note not to wear period underwear tomorrow.
Sidebar: electroacupuncture is kind of a bonus of treatment at Venn Med. (I mean, it doesn’t sound like a bonus, because, ouch, but I actually think it helps.) You may not receive electroacupuncture as part of your PoNS therapy. Then again, you could seek treatment with electroacupuncture independent of PoNS therapy, but that’s a post for another day.
I wear a shirt dress that barely covers my bum because it feels like the easiest way to provide lower body acupuncture access. It’s not like Venn Med is giving out paper gowns. The room gets the full show and in hindsight, I should have worn shorts but I don’t own any. I have no bum and I’m always bloated. I don’t do shorts.
Christie tells me she sees encouraging signs, but I don’t know. I’ve been to rehab before. I feel like cheerleading is what these guys are trained to do.
Later that night, I start to say, “I knew I would be tired, but I didn’t think I would be this tired”, as I full-on fall to the ground. The Banker offers to help me up, but I ask him to just let me lay there for a while.
I have more electro-stabupressure and do exercises I can only describe as Tummy Time. Relearning to walk can feel infantilizing.
Unlike past experiences with physio, the majority of the work we’re doing is extremely localized. I practice balance exercises, but the bulk of my rehab is hyper-focused on the areas that are the most impacted. We work the right leg almost exclusively.
I’m asked to crawl on all fours, on a table, in my denim mini skirt. (Technically, nobody asked for the denim mini.) When Christie wonders if she can film me, I say no, and she doesn’t seem surprised, confirming how obscene I look.
It’s only my fourth day using PoNS, but we do some tests to look for improvements and there aren’t any that feel meaningful. I’ve spent hours on a table just trying to bring my knee up towards my chest. It’s hard to get excited about the possibility that my lazy right foot is (maybe?) everting a few degrees more.
I feel disappointed and anxious, like, something should have improved by now. Otherwise why else are they testing?
It’s Saturday–my first day off—and I wake up in a mood. My PoNS device is spending the weekend at the clinic and I don’t miss it. I have a headache. I’m exhausted. It’s a beautiful sunny day, but I’m too wrecked to leave my apartment. I spend the day contemplating how hard it is to have a disease that pretty much promises to get worse. I blame hope for setting me up like this. And yet, I know I still have to keep trying.
2:52 a.m. I wake up in the middle of the night (as one does) and pull my knee towards my chest without thinking. It feels easy. I decide to try it again, telling myself that if I can do it one more time I will no longer want to die.
While The Banker sleeps next to me I do it 9 more times.
Suddenly, I’m a believer.
At the clinic I can only manage a few partial knee bends with Christie, which is more than I could do last week but it feels crushing after what I did after dark. I start to wonder if I only dreamt those nocturnal knee bends.
Later, I will realize that re-learning to walk isn’t like the movies. It isn’t linear.
This is hard. Mentally, physically, emotionally.
It’s the last day of the phase of my PoNS trial that involves daily afternoons of physio. I wake up singing ‘I don’t wanna go to rehab’, but without the singing. I can only do one knee bend in bed and wonder if I would have had this much ‘improvement’ if I’d done two weeks of rehab at this intensity without the PoNS device.
But then I do 10 knee bends in the clinic. Fast. I have witnesses to keep my brain from gaslighting itself. There’s cheering. Maria says she feels like a proud mom, even tho she’s young enough that she’s never seen When Harry Met Sally. Neither she nor Christie have even heard of Nora Ephron and it’s a good thing I didn’t know this before I put my trust in them.
It’s a massive win and the motivation I need to keep going.
I sleep for 10 hours and still need an afternoon nap. Is all this neuroplasticity making me sleepier? It feels weird to be congratulated for sleeping 10 hours, but I don’t know. Sometimes Fitbit just gets me.
I wake up motivated and do 40 minutes of training before I have my coffee. I reward myself with a biscotti and an Americano and quickly learn that my taste buds need time to recover. PoNS kind of numbs them, and it takes a beat to be able to taste again.
I show up to physio in vintage 1990’s Adidas tearaway pants, having finally figured out what to wear to maintain my dignity while getting semi-clothed acupuncture, assuming dignity looks like a middle-aged woman dressing for a 90’s rave. (It doesn’t.)
Am I getting better at walking after wine? Not like, better, better, but kinda?
I test my 25-foot timed walk at home and I’m down to 7.49 seconds. I do it in 9.6 seconds with my cane.
Fitbit tells me I took more steps today than I have in 3.5 years. I walked home from dinner on a patio in my hood, where I had two glasses of Chardonnay. I am getting better at walking after wine.
I’ve been religiously tracking my daily walks around the block since the trial began. Today I clock 17 minutes, which two months ago would have been impressive. Now it feels slow, except I did it without my Dictus. I’m starting to say “I can’t believe it” a lot.
It’s my penultimate appointment and we’re supposed to be celebrating my gains, but Christie is charged with yet again telling me that at the end of the year the cost of PoNS will be doubling to ten thousand dollars and the mouthpiece will jump from $500 to $2500 every three months. Is this a PoNS scheme? Like a savvy drug dealer, the first three months are free and once you’re hooked on that sweet, sweet, walking high, they own you?
Christie does some retesting that confirms what we both know: I am stronger and faster:
From the safety of my apartment, I’ve started to practice walking without any aids. Drop-foot means my right foot still needs to slide, but I’m able to stay on my feet, unsupported, in intervals of 20 minutes without breaks. I’m prepping meals without needing a chair. I feel safer getting in and out of the murder-tub. Don’t tell The Banker, but I could probably start doing the laundry again.
I’ve been watching my body get slower and slower for years. My go-to proposition to the dark arts mostly consists of pleading for things to just stay the same. I’ll be good. Just don’t let me get worse and you can have my first born baby. You can have all my babies. You can have my Prada sunglasses and all my Sephora points. I’ll even stop swearing if you just let me stay the same. I don’t ask for improvement, because even in a deal with the devil, improvement seems like too much to ask; too much to hope for.
PoNS review: can PoNS help MS progression?
If you don’t have MS, you might be wondering what’s the BFD? I still walk with a walker and pee with a catheter. I still very-fucking-much have MS. But if you have MS too, well, I don’t have to explain these results. For the first time in forever, my MS is changing for the better, with the intervention of a device whose only side-effect is that my hair occasionally gets caught in the hard plastic neckband.
So I ask myself, if this is what’s possible in 99 days, what’s possible in the next 99? And the 99 after that? What is possible for the future of my MS?
What are you saying? PoNS improves MS?
More research needs to be done. We all know that everyone’s MS is different. PoNS isn’t about overnight miracles; there’s hard work involved and PoNS isn’t going to do it for you. But there’s reason enough for me to believe PoNS has contributed substantially to my improving mobility.
If you want to know how to get your hands on your own PoNS device you’ll have to do some googling. I’ve reached out to Helius with a number of Qs, but the PoNS pusher who first contacted me—a guy who genuinely seems to care about people with MS—sadly, no longer works for Helius, and my line of communication has been cut off.
Helius has every right to make as much money as they can from their product (yay, capitalism). But, PoNS can change the lives of a few people or it can change the lives of many. While PoNS waits to qualify for the medical device status it deserves, people with progressive MS will continue to wrack up disability. We don’t have the luxury of time on our side.
While I feel very lucky to have participated in this research, as trial participants, we’ve invested considerable time, effort, leaps of faith and the significant cost of intensive physio–investments that will contribute to the eventual approval of PoNS as a medical device.
Helius, you’re not taking my calls, but I know you’re reading this. Please do the right thing and make PoNS available to more people with MS. I urge you to allow your study participants to keep their devices once the data has been collected (a gesture which costs you nothing), and to reconsider your extraordinary cost increase.
I’d love to hear from other PoNS users. Some of you have reached out privately, but if you’re comfortable sharing in the comments, I know others will benefit from your perspective.
I’ve been without PoNS for a couple of weeks now, but I’m not willing to plateau. I set fire to my credit card and invested in the device and a stockpile of as many mouthpieces as I could manage before prices go up at the end of the year. I’ll start PoNSing again, when my new device arrives, and I promise to keep you posted.
Keep moving, Trippers. There’s hope on the horizon.
Lately I’ve been having more MS days than not. I’ve been spilling shit and falling down and taking fewer steps than average. It takes an increasingly ridiculous amount of time to get my legs through leg-holes. This morning I picked up the French press and poured my coffee down the sink instead of into my mug. Pretty sure I’d be spiralling into What Comes Next worries if not for this PoNS trial I’m about to jump into. (But like, hobble into.)
The Banker will tell you it’s been hot, that I’ve just gotten over a UTI. Or maybe this is the elusive Ocrevus Crap Gap I’ve heard rumours of but never fully understood. (I’m 5 1/2 months post-infusion and could someone gently explain with science how the Crap Gap impacts progressive MS?) That there’s a reason, or an explanation for all these stunts is little comfort. I might come back a bit from bad days, but the trajectory of my MS isn’t changing. Things are gradually getting worse for my tired little body. From time to time, the damage needs to be assessed and freaked-out over, before I can move on.
Like getting older, MS progression is a sneaky mother-fucker. You don’t notice your face changing from one day to the next, but every now and then you catch a glimpse of your bare bum in a full-length mirror and wonder when the hell your ass fell down.
With MS, it’s wondering whether you’re actually getting slower or just not trying hard enough. It’s asking yourself ‘when did I stop being able to put my pants on standing up’. One year ago? Two? It’s seeing someone on TV bolt upright in bed and being stunned that they didn’t need to grab onto the sheets and wriggle themselves up in a complicated process. Was I ever able to do that?
Yeah, yeah, sucks to be you, but what the heck is a PoNS trial?
Right. PoNS stands for Portable Neuromodulation Stimulator, and I’m not sure why they didn’t just call it a PNS device.
Oh wait. I just said it out loud.
The PoNS is a science fiction-sounding deal that electrically stimulates the surface of the tongue in an effort to trick the brain into neuroplasticity. It’s used with intensive physiotherapy to improve gait and balance in people with MS.
I first heard about the PoNS from my friend Joe, who sent me Norman Doidge’s book The Brain’s Way of Healing. Joe included a note telling me to check out how the PoNS had helped a singer’s effed-up MS voice. The singer saw his first results after four minutes with the device, and after 30 years of MS, went from using a scooter to tap dancing in 2 weeks. I don’t have patience for miracle cures and things that sound too good to be true, so I shelved the book. I don’t wanna sound like a doubting twat, but guys, I’ve been burned by hope before, and this book was big on stunning anecdotes and light on critical assessment.
Before the book could collect too much dust, I was coincidentally contacted by a representative from Helius Medical Technologies about the PoNS device. The rep had big used-car-salesman energy which only increased my skepticism. I didn’t take the potential for the PoNS seriously until I learned that my own doctor, was conducting a study at my MS clinic. The PoNS pusher (actually a lovely, intelligent guy, who seems to genuinely care and doesn’t deserve any sass from me–but for sure has a buddy who can hook you up with a good deal on a Ram 1500), shared some of the PoNS research. The data was much more reasonable than Doidge’s claims, and therefore, almost believable.
I qualified for the trial, took a deep breath and when I asked my physiatrist for her opinion, she noncommittally shrugged, “It can’t hurt”.
Preparing for PoNS treatment for MS
Before the trial begins I had to do a timed 25-foot walk test. It took me 24 seconds with my cane and 12 seconds with my rollator to walk 25 feet. Then I spent several hours in my head, grieving my decline, while simultaneously trying to feel grateful for legs that are as effective as they’re ever going to be.
For all my self-love and #babeswithmobilityaids pride, don’t kid yourself. Getting worse is hard. There are many days when I have zero chill about what this disease is doing to me.
This is the point where, normally, I would shop my feelings, and rewatch Gossip Girl. And, sure, I did buy two dresses and drop a sick amount of money on socks. But this PoNS trial is giving me another option beyond coming to terms with my weakening legs. The PoNS treatment is trying to seduce me with thoughts that my MS gait could actually get better.
What happens during a PoNS trial for MS?
The trial lasts 14 weeks, and I get to keep the device and can continue using it forever. The first 2 weeks involve intensive in-person training sessions that will require me to be at a clinic for half a day, but let’s just call it a full day, and don’t try to reach me, because it’s going to be mentally and physically exhausting as I work to override my own brain. This will be followed by 12, weekly in-person sessions. The rest of the time I’ll be required to work with the device on my own to improve my gait and balance.
That’s what I said. The Helius rep connected me with a PoNS user who talked about people getting up out of wheelchairs. She was certain I’d soon be able to ditch my rollator. You won’t find these kinds of claims on the PoNS website. The reviews are positive but restrained and they don’t overhype the device. The study was small (20 people), which is why we need ongoing research. But PoNS treatment is already available in Canada and recently received FDA approval in the US.
A physician review on the site says “It has been a privilege to witness the amazing efforts put into this program by our clients, and then in turn, the impressive outcomes! While not true for every single case, many clients with MS have found the PoNS to be the missing link that helps them to see results from their dedicated rehabilitation regimen.”
While I definitely don’t trust people who use exclamation points, this is hardly Lazarus rising from the dead level enthusiasm. Even so, I stopped cold at “not true for every single case”. While I’m starting to believe this device is a game-changer for some, if it doesn’t work for me, what then?
It can’t hurt
My cautiously optimistic physiatrist added to her Hippocratic endorsement that I was sure to gain muscle and sleep well by the sheer amount of physio I’ll be receiving alone.
She’s not entirely right that it can’t hurt tho. 14 weeks of hard physical and mental work cannot be underestimated when fatigue is so debilitating that I have to make careful choices about how I spend my limited spoons. I don’t think people realize how hard we have to work for even small gains. Or worse still, when all this exertion doesn’t actually make us stronger. You can’t blame us for choosing to use our precious energy out in the real world rather than on barely noticeable leg lifts and tedious toe curls.
But bigger than the physical investment is the emotional one. If it feels like I’m being overly dramatic about the potential for even tiny changes in my ability to walk, then congratulations. You probably don’t have difficulty walking. It’s hard to articulate how scary it feels to allow myself room to believe the PoNS could help. On the other hand, it’s impossible to invest this kind of effort and energy without believing it might pay off.
Don’t you have to leave room for the possibility of miracles to work this hard?
I never wanted to get my hopes up with the PoNS device. I push myself to accept my declining ability to walk because the futility of railing against the inevitable is heartbreaking. But it’s too late. My hopes are up, and here I am, railing against MS anyway.
Warning: It’s about to get all diet-y up in here. In addition to the unfair body standards we’re all subjected to, chronic illness seems to invite a whole new level of judgement. MS IS NOT YOUR FAULT. If you have a history of disordered eating, fasting and ketosis for MS may not be for you. This isn’t medical advice; it’s just what I’m doing. Always talk to your doctor.
How To Hack 5 Days Of Fasting And Ketosis For MS
There’s a lot of buzz around fasting and ketosis for brain health and even as an MS treatment. Call me basic, but I love a trend, a fad, and even a craze. So when my naturopathic doctor (ND) suggested I try the Fasting Mimicking Diet® (FMD), I was like, sign me up. And while you’re at it, I’ll have an aperol frosé after I put on this oversized hat, and dig out my 90’s bike shorts.
More than a ketogenic diet, the FMD is a 5-day plant-based plan that tricks your body into thinking it’s not eating, thus thrusting it into survival mode. The idea is to reduce inflammation, boost cellular rejuvenation, reset the immune system, and stimulate the body’s own stem cells.
Intoxicating words for someone with MS.
The science behind fasting and ketosis for MS
Here’s a boring link some captivating science you should totally read, or at least make your doctor read, if you have any intention of trying to temporarily starve yourself to health.
While there are different interpretations of intermittent fasting, my ND, Dr. Deprivation, wanted me to try ProLon®, a convenient but expensive kit full of soups and snacks and everything you need to (not) eat for 5 days.
Unfortunately, ProLon is packed with things I’m allergic to, and since I didn’t love the idea of death by low-calorie diet bar, Dr. Dep and I decided to create the Ardra Protocol (AP): a bespoke menu to match the macros of ProLon (50% fat, 40% carbs, 10% protein, 0% joy), adjusted for the amount of calories it takes to keep my slow-moving, mostly supine body alive.
My instinct was to do the math on how many chips and glasses of prosecco this translates to, but the answer was unlimited lettuce and not enough hooch. So I figured out a smoothie, a soup, and a salad recipe instead. My Fitbit (but like, SitBit) app let me log every calorie consumed while simultaneously tracking my macros.
Despite ProLon’s hefty price-tag, I felt a skosh of remorse that I didn’t send them my Starbucks points, or even my Canadian Tire money for all their R&D efforts. Normally my cold heart wouldn’t care, but the majority of ProLon’s proceeds go to charity. Wow!
On the other hand, the packaged diet claims it was designed for people who are “busy” and “on-the-go”, and I am neither of those things. So.
Finding 5 consecutive days to fit a ketosis inducing fasting fake-out into my life was tricky. I didn’t want to sacrifice my social life, or even one weekend brunch. Plus, I was advised not to fast during a heatwave. That left me a tiny window in July between all-day mimosas and a reunion with my university roommate. Because gossip and catching up means vodka and Miss Vickie’s–the staples of our youth that put her on a path to a PhD and work with the Gates’ Foundation, and me on the road to writing on the internet about peeing my pants. We’re both killing it.
Diary of what I didn’t eat for 5 days of fasting ketosis for MS.
9:15 am I have 2 cups of coffee, which is allowed on the AP, otherwise what is even the point of extending your life?
12:30 pm My first calories come from a strawberry, cucumber, pumpkin-seed butter smoothie that I promise to make last at least 30 minutes.
12:37 pm 7 minutes later I’m sucking air through a straw like a philistine. I’m not getting any more of my smoothie, but I’m def giving myself gas.
1:00 pm Despite the speed with which I inhaled my breakfast I feel smug–like this is easy, and I’m the best at fasting, ever.
1:50 pm I heat up my homemade zucchini soup. Meh.
4:04 pm Snack time means a green apple and I’m reminded why I never buy green apples.
6:15 pm Dinner is a big salad with 4 of the expensive olives I usually reserve for martinis. I slice them each into 6 pieces for maximum olive coverage.
8:05 pm I have 8 cherries and they taste so good I feel like I am doing something wrong.
9:45 am Still feeling smugly, I sip my coffee and decide that, so far, mild starvation is not even in the top 5 hardest MS treatments I’ve had.
11:32 am At 152 calories, my first meal of the day is a lower fat, higher carb version of the smoothie I had yesterday. Banana made it better, and I make it last 27 minutes.
3:12 pm I have some green tea, and no green apple. Apples are only for Day 1 when you’re supposed to ease into things and few more calories are permitted. Anyway, that apple sucked and I don’t miss it.
8:06 pm I savour 1 cup of fresh strawberries and give three cheers for summer produce.
9:37 am I’ve been awake for an hour and I’m a little dizzy. I decide to add caffeine to that, because I make good life decisions.
10: 35 am The rooms’s a bit spinny and I make my smoothie as fast as I can because I’m pretty sure I’m about to barf. I suddenly remember brushing off Dr. Dep’s warning not to do this when I would be alone all day. I down the smoothie and 13 minutes later I’m fine. I mean, I’m fine-ish.
11:34 am I open the fridge to an unholy amount of Oscar-the-Grouch-green soup. I decide to ‘accidentally’ drop it, but realize I lack both the strength to lift such a tremendous amount of garbage water and the energy to clean it up. I close the fridge and go lie down.
12:00 pm I have a meeting which means my afternoon requires that I not faint or barf. I swap my dinner for my lunch and eat my big olive-y salad.
2:55 pm I arrive at my meeting with 426 calories in my belly, praying that the sound of my tummy trying to eat itself doesn’t give away my cheeseburger FOMO.
4:30 pm I survive my meeting, and for the duration, forget about food. On my walk home, a random superhero leaps into the intersection I’m waiting to illegally cross, throwing up his hands in a ridiculous display to stop traffic in 3 directions. This isn’t a diet-related anecdote. Just a day in the life.
8:00 pm Not wanting a repeat of this morning, I decide I need a few extra calories and ask The Banker to please bring me 1 fig, 5 cherries, and a small square of dark chocolate.
8:03 pm I send back the fig, asking for a bigger one. He drops the bag on the couch next to me, and I sift through it, touching all the figs until I find the Mack Daddy. The Banker seems annoyed and I remind him that he chose me.
8:55 am Last night’s fig binge was a good idea. I wake up feeling fine. Bored with food, but fine.
9:34 am I outsmart my body and have my smoothie before my coffee. I add the avocado that was supposed to be in my salad just to make sure I don’t get the spins again.
2:21 pm I have 2 figs and a cup of green tea. The figs are off-label, but I feel like it’s fine because I did 20 minutes of cardio on the arm-bike. I’m in the bargaining stage of grieving food.
5:56 pm I briefly wonder what Miss Vickie is up to before eating some homemade kale chips with more salt than the Dead Sea.
10:00 am I drink my coffee and stare absently at a mid-morning talk show. I’m struggling, not from lack of calories, but from lack of sleep. I don’t blame the Ardra Protocol; nocturnal nerve-pain keeps me up on the regular.
11:27 am I’m still feeling spacey but I have shit to do, and I need my brain to work. I add pumpkin seed butter to my smoothie, boosting it to a whopping 237 calories. I’ll make it up later.
1:33 pm I’ll say one thing for ProLon, they don’t make you eat the same fucking soup for 5 days.
2:15 pm I feel hungry and I try to embrace it, imagining that this is the feeling of my body repairing itself.
3:00 pm I discover that napping is an excellent way to enjoy not eating, then feel pissy for not having hacked this sooner.
I survived 5 days of fasting and ketosis for MS
The morning after my 5 days on the AP, I step on the scale and find I’ve lost 3 lbs. Wine isn’t really a breakfast beverage, so I make a smoothie and pretend it’s a milkshake. I’m following the rules, anyway, as Dr. Dep tells me what we eat immediately after an FMD is as important as what we don’t eat during an FMD.
Well, FML, because I haven’t stopped day-dreaming about gaining back that 3 lbs in pancakes and pie as soon as possible.
Is fasting and ketosis the right MS treatment for me?
I give this 5-day plan 5 stars. Compared to the treatments and therapies that have left me with everything from injection site reactions, to migraines, flushing, fever, flu-like symptoms, hives, vomiting, rash, and secondary auto-immunity, the AP left me a little hungry, maybe a tad preoccupied with food. I was never hangry; in fact my mood was better than average, and aside from some touch-and-go moments on the morning of Day 3, I had more than enough energy to go about my daily activities (including exercise).
There is no 5-day plan that will fix your MS. This is about trying to modify the course of MS over years, not days, and while fasting and its effects on MS are still being researched, I feel like I can commit to repeating the AP a few times a year. Depending on my brunch sched, natch.
In the meantime, I leave you with this Ted Talk by Valter Longo, the OG of the FMD.
After a particularly dismissive appointment with my interim, now former, neurologist, where all I was sent away with was a you’re worse, there’s nothing we can do, see you in a year treatment plan, I found myself feeling like so many others with Secondary Progressive MS: sidelined, abandoned, hopeless.
I left the MS clinic that day with a desperate vibe, believing that even though nobody will look me in the eye and say it out loud, it’s only a matter of time before I can no longer use my legs at all, and why the fuck isn’t everyone (or anyone, for that matter), freaking out about it?
If my appointment hadn’t felt so rushed (aside from the 90 minutes I spent in the waiting room); if the clinic weren’t so under-resourced that it’s near impossible to be seen outside of annual visits; if the doctor had taken my symptoms seriously (as opposed to chalking them up to anxiety); and if his office hadn’t been such a fucking garbage fire, maybe I wouldn’t have felt like I needed a second opinion. Not to mention a new doctor.
Would you trust this hoarder with the health of your brain?
So I went to the Tisch Centre in New York, where some exciting, hopeful research is being done in the field of MS, to seek that second opinion. I kept my expectations low. At the very least I’d hear confirmation that there really isn’t anything that can be done.
When the NYC neuro recommended I try one of the drugs recently approved for progressive MS, I left his office with a hope I hadn’t felt in four years. I was excited. I felt light. I caught myself smiling at strangers instead of scowling at babies. Don’t get me wrong; I know this disease well enough not to hope for a cure or even substantial recovery. But the sliver of hope I was granted that day was intoxicating.
Well, fuck hope.
I took my fancy, big-city recommendation back to Canada – not to Dr. Paperwork; I’m done there. I took my recommendation back to a neurologist I hadn’t seen in three years; the doctor who initially diagnosed me and treated me for more than a decade – R-Dogg. I have to travel out of town to see him; The Banker must take time off work to get my non-driving ass there (the reason I’d left in the first place), but I knew I’d be getting better care than what my current clinic is able to provide.
R-Dogg and his staff welcomed me back to their practice where the office hasn’t changed. It felt weird to be there, but good. Safe. I trust this man. I trust his whole team. But you already know what happens next; or else, why would I be writing this.
R-Dogg has been giving me the shittiest news of my life since 2001. Why should this day be any different?
I have SPMS, but I don’t have active SPMS. I don’t have new or enhancing lesions. No enhancing lesions means no treatment. Even if I feel like MS is actively trying to ruin me 24 hours a day, no MRI activity makes my lazy, insidious disease quantifiably less susceptible – some would say completely insusceptible – to therapies, therapies that carry risks. I knew all these depressing af facts going in, but my shiny, hope-shilling, freedom-loving American doctor has his reasons for believing more treatment is worth a shot, and that was good enough for me.
High on hope or just high?
But it wasn’t good enough for my maple-glazed, gunless, cautious Canadian doctor who told me to trust the science. Not my emotions.
R-Dogg doesn’t write prescriptions for hope.
I sucked the tears back into my eyes as I left my new/old neurologist’s office feeling like I’d been punched in the stomach. I can’t be mad at him for taking away my hope. I never should have hitched my wagon to hope in the first place.
I mean, why do we have such a good opinion of hope anyway? How is hope an actual virtue when hope is literally the desire for something and the expectation of receiving it. In what world is hope not a douchebag? Hope sounds like a toddler melting down because you won’t let her feed hamburger buns to the cat.
Allow me to break down the problem with hope and MS:
Hope can be a real downer
Hope can set us up for incredibly cruel disappointment. Not I’m bummed because everyone’s wearing pink now, and that was my thing kind of disappointment. When hope is repeatedly dashed, hope can turn into hopelessness, even despair.
Hoping against hope that my MS simply goes away sets up a cycle of grief when, year after year, it laughs at my restraining order, and continues to get worse.
Hope doesn’t prepare us for negative outcomes
If you don’t save for retirement because you hope to win the lottery, duh, that’s irrational. We call that out. We know it’s unhealthy to put our heads in the sand and hope for the best without preparing for reality, yet we encourage this kind of thinking in sick people.
When we’re diagnosed, everyone tells us to have hope, when what we really need is to be encouraged to be brave, to nurture strength. We need doctors and loved ones to acknowledge that what we’re up against is going to be hard. Really hard.
When we accept that the world is unfair, that suffering is part of the human experience, we can focus on what’s realistically modifiable. Hoping that my body will heal can prevent me from cultivating the courage to cope with what happens if it doesn’t.
Hope can make us do stupid things
Being drunk on hope can cloud our judgement. The more we have hope because we’re desperate, the more likely we are to undergo risky treatments, spend money we don’t have, even travel to sketchy places for un-approved procedures. I’m not judging. I’ve done all these things. The other end of this spectrum is to hope that things will work out without intervention. This can lead to neglecting the importance of diet and exercise, maybe taking up smoking, or ghosting the dentist, or even refusing medical treatments that could help.
Hope can be a barrier to acceptance
Whether it’s faith in God or faith in pharma, we’re taught from diagnosis that the only acceptable way to proceed is to believe we will get better. We’re told to be warriors, to fight against fate, as if by refusing to accept our diagnosis we will somehow be able to reverse it.
It’s hard to have this kind of hope without actively hating your life. It takes more courage to accept an unjust future than to deny one. It takes more courage to love your body, broken though it may feel, than to rage against it.
Clinging to outcomes over which I have no control keeps me longing for the way things were. It keeps me feeling bitter about the present. It keeps me fearful of the future.
Hope and fear are kissing cousins
Hope and fear are just informed guesses about what comes next. But there are no guarantees in the unknowable future.
I spend zero seconds of my day hoping I don’t get hit by the proverbial bus. I don’t have to hope the murder-bus doesn’t get me, because I just expect it won’t. However, I spend all my waking hours (and some of my sleeping ones) hoping MS doesn’t destroy me because it’s the thing I’m most afraid of.
Hope is not the absence of fear. It is the manifestation of it.
What am I supposed to do now? They say you have nothing if you don’t have hope.
Letting go of hope doesn’t mean feeling hopeless. The key is to hope wisely. Par exemple: I hope I go to Paris every year for the rest of my life. That’s good hope. I hope you have a nice day. Another fine example. I hope I never turn into my mother is the kind of self-deluding hope that would be better served by making space in my closet for giant hats and used wrapping paper, while looking forward to the day I get buzzed off of half a glass of zinfandel.
Letting go of hope and accepting the way things are doesn’t mean being complacent with your health either. Like Derrick Jensen (Endgame) writes, “When hope dies, action begins”. For me, letting go of hope means being even more committed to diet and physio, because for now, they’re all I’ve got.
Letting go of hope means living in the present and finding gratitude for the way things are despite the difficulties. My hopes aren’t high; in fact, the thing I seem to always be hoping for the hardest is to just stay the same, to not get any worse. In some ways, the thing I’m hoping for is the thing I already have.
And if a cure does come along it won’t matter if I hoped for it or not.
This is the part of the blog where I kiss you good-bye and ask you to follow me here. But just as your tragic heroine (moi) was about to proofread and hit Publish, the phone rang. It was R-Dogg with a third act plot twist. He’d like me to repeat my MRI. Turns out Dr. Paperwork wasn’t monitoring my thoracic spine – the place where my worst lesions live. If there are changes there, we will consider treatment after all.
Right before we hung up R-Dogg said, and I kid you not, “So, there is hope.”
As a notorious over-sharer and MS blogger, I get asked all the time what medications and therapies I recommend to treat my MS. So when Med-IQ, “an accredited medical education company providing exceptional educational experiences for physicians, nurses, pharmacists, and other healthcare professionals,” wanted to partner with me on this subject, I thought, this is a good idea, because I am not an accredited medical company providing educational experiences for physicians, nurses, or anyone else.
Plus, they’re totally paying me to say that; this is a sponsored post. (But don’t worry, I looked into it, and Med-IQ’s story checks out.)
When I was first diagnosed with relapsing remitting MS (RRMS), one million years ago, my doctor sent me home with four pamphlets, instructing me to read them and figure out which disease-modifying therapy (DMT) I wanted to take. I had only heard about MS for five minutes, and I was being asked to make what felt like a colossal life decision.
So, I was like, “Uhm, excuse me Raymond, but shouldn’t this be your call? I studied music and binge drinking in university. You are literally a brain surgeon, and I’m feeling a little under-qualified to, you know, make decisions about NEUROSCIENCE.”
Turns out, Raymond and I were not on a first name basis.
Since then, I’ve learned a lot about MS, but I’m still no brain doctor, and that is why you should not ask me which therapy you should take. The good news is, I can help you figure out how to know which therapy is right for you. As always, this is not medical advice. Do your homework and talk to your doctor.
One of the first things you learn in MS Boot-Camp is that everyone’s MS is different. Like so, so different. If you had a twin with MS, their disease course might be the Danny DeVito to your Arnold Schwarzenegger. Heck, your own MS may not be the same from one year to the next. Which is important to remember, because nowadays there are a lot more than just four MS therapies to choose from, and there is no one-size-fits-all medication. You need to find the treatment that works for you.
Spoiler alert: There’s still no cure for MS, and none of the available treatments are perfect, which is why you continually need to ask yourself if your treatment is working for you. Disease modifying therapies do just that – they modify the course of MS. They slow it down, but they do not necessarily stop it.
What to consider when choosing a DMT:
Decide what kind of patient you want to be, and make sure you have a doctor who is on the same page; one who will work with you to make decisions about your health as a team; one who will take the time to explain your options; one who is comfortable prescribing a variety of DMT’s; one who will respect your level of risk tolerance; and one who will consider how aggressively you want to treat your MS.
When I went back to Ray and told him which treatment I’d chosen, he said, “No. This one is better.” And I was like, “Dude, what the hell? I spent the past two weeks agonizing over this.” I’m not sure if my doctor was trying to make me do my research, or if it was some weird test that I’d failed. We had a little tête-à-tête, and ultimately he was able to convince me why his choice was the right one at the time.
MS takes a village, but the most important person on your care team is you.
Managing MS is a life-long commitment, but you don’t owe your DMT any monogamy. Once I started having relapses on the drug R-Dogg had chosen, he switched me to the medication I had initially selected. I felt pretty smug about this; like, maybe I could be a neuroscientist after all.
Being on treatment means constantly determining whether or not your therapy is working for you. This means undergoing annual MRIs to look for new lesions, attending regular follow-ups with your doctor, and paying attention to any changes in your body that could be signs of new disease activity.
Let’s face it; none of these drugs are easy; MS is a tough disease. All of the therapies carry side effects and varying degrees of risk. People stop treatment for many reasons. Maybe you feel like your MS is under control, but your quality of life is being impacted by side effects. Maybe you’re sick of needles, or headaches, or hair loss. Maybe you don’t like your doctor.
If you’re feeling treatment fatigue, or frustration with your physician, better to find a new doctor and consider a new DMT than to just ghost either of them completely. MS can escalate quickly. Stopping treatment without a plan or the care of a doctor can lead to serious consequences.
Wait and see?
Some people decide to go without treatment for their MS; or to wait until symptoms get worse before taking action. This is an older approach to MS that is less popular now, because we know that early intervention equals better outcomes. If you do choose the “wait and see” approach, it’s important to remember that even if your MS feels more manageable than treatment would, things can change at any moment, and damage may be irreversible. Even if you feel good, MS can silently be wreaking havoc.
Managing MS successfully means being a proactive patient and participating in your own care. You don’t have to be brain-surgeon smart to do this. Listen to your body, ask questions, and find your own Raymond – the neurologist who will listen to you, respect you, work with you on treatment decisions, and pretend not to be annoyed when you call him by his first name.
But wait! I have more for you than awesome advice.
Med-IQ wants to thank you too. You could win one of three $100 Visa gift cards for completing this short survey that contains some additional education on MS.
Do you even know what you could get with a hundred bucks? That’s 28 bags of Miss Vickie’s chips. That’s a 3 1/2 pound wheel of imported parmesan. You could download 100 songs or take your parents to The Cheesecake Factory. I don’t know what you’re into, but please tell me if you win, because there are two other bloggers offering this deal, and I wanna know that someone from Team Tripping won. (No offense, other bloggers; you’re doing great.)
This survey is not sketchy and it’s totes anonymous. Email addresses will not be kept, sold, or stored; and will only be used to randomly draw the winners and notify them of their sweet, sweet prize.
I finished round 2 of Lemtrada 15 months ago and last week I was asked by MS OnetoOne, the mandatory support program for Lemtrada users, for feedback as to how this drug has made a difference in my life. Until now, I’ve hesitated to write about my experience but they promised to throw in a $25 gift card for my trouble so, clearly the universe is telling me it’s time.
I know what they’re looking for, with their flashy prize money. Now that my treatment is over, they wanna hear about how I went from having a life ruled by disease and disability to one where I almost forget I have MS. They wanna hear how I went from laying around all day watching Golden Girls, to hiking the Himalayas and crossing shit off my bucket list; that I ditched my old lady aqua-fit friends because those blue-haired bitches were holding me back.
Now I teach dolphins how to swim.
This is not that story. I would never ditch Myrtle. And dolphins are jerks. But I really want that vague gift card (please let it be 8 bags of Miss Vickie’s chips), so I’m hoping my less-than-miracle story still qualifies.
How Lemtrada Has Changed My Life
The biggest and most noticeable change is that I have blond hair now. Obviously. I mean, it’s the first thing anyone who hasn’t seen me in awhile notices. It’s possible that “OMG you’re a blond now!” is more socially acceptable than “OMG you’re using a walker now!” but I like to think the walker isn’t all that noticeable.
that hair tho
My grades are higher
When I started Lemtrada my EDSS was one whole point lower. I was walking with a cane, some of the time. Now I’m using a walker/rollator all of the time. Too bad MS is opposite world where things like ‘progress’ and higher EDSS scores are not going to make me an honours student.
Lemtrada straight up murders your lymphocytes and 15 months after round 2, mine are still a little afraid to come back. If you have an autoimmune disease, your lymphocytes are your best frenemies who can’t decide if they wanna kill you or save you, so they do both. You need those two-faced, back-stabbing lymphies to keep your immune system in check, so while mine are still low, I almost always have a UTI and if you sneeze within earshot, I will treat you like the leper you are. But exposure to Lemtrada opens you up to way more risks than just the flu (just the flu? I’d rather have herpes). Some risks are known, like thyroid disease and actual herpes, but since this drug is still new, others are a surprise, waiting to be discovered. Like the one I developed that has sent me to the ER several times and requires me to see a whole different kind of specialist.
Lots of people on Lemtrada make new friends during their infusions or through online forums. Personally, I’m on a first name basis with the nurses at the lab where I’m required to have a donutand a full blood work up once a month for the next million four years. There’s also my MS OnetoOne friend who emails and calls, uhm, a lot, to remind me to get this work done. I mean, I thought she was my friend. She asks a lot of super personal questions but gets wierd when I ask her the same. One time I didn’t call her back or answer her email and I guess she thought I was ghosting her cause I got a crusty, collection-agent style letter. Priority courier. She’s intense. I’m gonna stay on her good side and get my labs done on time, just in case.
I have to explain myself way more
‘Wait, didn’t you get that beast of a drug that was supposed to stop all this shit?’ is a question I get a lot. Annoying. I’m constantly explaining that it didn’t work that way for me. Then I get to answer questions like ‘Why don’t you just get HSCT.’ Cause it’s not that fucking simple, Brian.
OnetoOne asked for what’s different but maybe the good news is what has stayed the same. My MRI’s are unchanged. In the 27 months since my first treatment, there’s been clear progression from old disease but there’s been no new inflammation. I haven’t had new attacks and I should accept that as a good thing rather than simply seeing it as confirmation that I’m fully SPMS. We’ll never know if things would have been worse or what kind of lurking inflammation may have been shut down. I don’t regret my decision to deal with the devil – I think I’ll always be willing to assume considerable risk for the possibility of being a little better. Lemtrada is an amazing drug. It just wasn’t my amazing drug. And while I’m pretty sure my story won’t make it to the manufacturer’s marketing materials, it’s important to tell all the stories, because we are far from conquering MS and there’s still a lot of work to be done.
In an attempt to calm down my MS I’ve been riding a rollercoaster of steroid-induced psychosis these last few days.
Warning: This is some Girl, Interrupted, peek into my brain on drugs, shit. You don’t need to call any hotlines. I dipped my toes in crazy for a few days but I’m fine now. Just, read at your own risk. This is what it was like for me to get steroids for an MS attack.
Dear Diary, Shit’s about to get weird.
Get up early, put on a cute hat, get coffee and head to the hospital. There’s a slight chance my incurable disease could see some relief, so today’s a good day.
Steroids are hard, but this time’s gonna be different. This time, I’m gonna be the perfect patient. I’ll wear pink pyjamas to match my pink, puffy, face and it’ll be adorable. I’ll be like, guys, I’m so sorry if I freak out and try to destroy you when the drugs hit me, but really, I know everything’s gonna be fine and everyone will be like, Wow, she’s got her shit together. Look at how awesome she did. High five!
My infusion nurse arrives at my home and asks if anyone else is around that could unhook my IV so she won’t have to come back. I tell her to ask the dog and she looks at me like I’m the unreasonable one. When she does come back she offers to take my vitals and flush my vein “if I want”.
By midnight, my tummy hurts and my bones ache but I don’t complain because it’s worth it.
The paltry AF sleep aid I was given barely makes my eyelids heavy, but I decide to embrace it and get shit done. Write the best blog ever, read all the things, learn to speak Russian. It’s like I’m on speed, but with no down-side.
Look in the mirror and decide my pie-face makes me look younger, because I’m a glass half-full kinda girl.
So far no benefit from the steroids and that’s making me anxious, but there’s still time.
It’s my last infusion and my lazy nurse asks me if I’m comfortable taking out my own IV. Again, I refer her to the dog.
Day 4 (morning)
Infusions are over and I’m not tethered to a pole anymore. I could shower, but I don’t. I mean, I feel okay, but not shower-okay.
In fact, I’m a bit dizzy and I realize I’m weaker than I was pre-steroids. Not a good sign.
Give myself a quick sponge bath and get a ride to the salon for a blow-out so I won’t have to lift my own arms to dry my own hair. I tell myself the worst is over.
Spoiler: No it’s not.
Day 4 (afternoon)
Appreciate the feeling of clean hair for 7 minutes and then crush my blow-out by going directly back to bed for 5 1/2 hours.
Wake up and feel sad it’s still light out.
Cancel plans for a rooftop hang with my Ginger Bestie and her BF.
Day 5 (morning)
Wake up and realize I can’t move my right leg. Panic a little.
Text The Banker, who got up hours before me and is in the next room, to come and help. He kisses me good morning (it’s lunchtime) and then patiently bends and straightens my leg until it feels limber enough for me to use it.
Step on the scale and wonder how it’s possible to have gained 6 lbs overnight when all I ate was saltines and half a banana.
Cancel plans to attend Canada Day BBQ with more besties and my sweet godsons.
Experience increased feelings of FOMO.
Day 5 (afternoon)
Make coffee. Pour it down the drain because prednisone makes everything taste like poison.
Decide steroids have not helped and that I’m ready for my Make-A-Wish. Feel too sad to think of any good wishes.
Scan Spotify for a playlist that will match my mood. Find nothing in the genre of Devastating Illness Ennui. Briefly consider one called All the Feels before deciding that anyone who uses this phrase should die.
Day 6 (morning)
Accidentally knock over a bag of garbage and decide not to pick it up. Ever. Decide I hate everything, throw out half my stuff and then wonder what I can buy to make myself feel better. Cancel plans to attend a holiday BBQ in the ‘burbs.
Make a note to stop making plans.
FOMO’s at an all-time high.
Day 6 (evening)
The Banker is hiding in the storage locker with the dog asking Siri if Werewolf/Vampire rules apply to Solu-medrol Beast People.
After holding back tears and trying to suppress a full-on meltdown all day, decide that confronting the loss of mobility is actually a pretty reasonable excuse for a meltdown.
Call my parents and try to get them to meltdown too. Meltdowns for everyone!
Congratulate myself for not being a drug addict or an actual alcoholic because it’s really tempting to not wanna feel any of this.
Decide extreme sadness is not sustainable and brainstorm ways to pull myself out of this hole.
Download a meditation app. Don’t open it.
Decide to feel grateful that my tummy hurts less than it did yesterday, that my coffee no longer tastes like arsenic, and that I still, probably, have friends and a husband, somehow.
Allow myself to grieve what I’m losing. Know that somehow, I will come to terms with this fucking nightmare.
Side effects include buffalo hump, moon face, and extreme hiccups. I wish I were making this up.
How To Survive Prednisone For An MS Attack
As a long time multiple sclerosis patient with very active disease, I’ve had way too much experience with the roller-coaster ride that is treating an MS relapse with IV prednisone (solu-medrol). While these steroids can produce impressive results, they also prove that if something seems too good to be true, it’s probably gonna give you acne. It’s definitely gonna make you constipated.
How to handle the side-effects of prednisone
I never leave my first prednisone infusion without a prescription for something like ranitidine (to kick the stomach acid) and something (strong) to help with sleep. I usually ask for horse tranquilizers and get a dirty look. Worth it. The side effects of steroids are well known, but some docs wait until you call back the next day because you’ve been awake for 26 hours, before they offer you an Rx. Don’t suffer.
Some find their appetites increase on prednisone, and that sucks extra for them, because steroids make everything taste like poison. I always have a painful tummy so I keep crackers, dry toast, and ginger ale on hand. If you’re fancy, homemade bone broth is better than packaged soups, because of the sodium, which you wanna avoid because things are about to get real puffy. If you can’t put down the Miss Vickies because you love salt like I do, just know that your face is gonna look like a pie for awhile and accept it.
For the first time ever, I don’t mean booze. You have to hydrate like hell with actual H2O because prednisone means water retention. Like, stay out of the rain or you will probably absorb and retain that too. In addition to all the water-weight, this drug is constipating AF so try to get ahead of that. Whatever your bowel routine is, double it.
Stuff to read
When I’m wide awake in the middle of the night, it’s tempting to turn on my laptop and write. Or read gossip blogs. Or shop. I’m feeling wired and creative and a little bit sorry for myself, like I at least deserve a new lipstick, maybe some shoes, just for having to go through these things. Resist. Screen time in the middle of an insomnia attack is def going to encourage wakefulness longer than flipping though a magazine or reading a book will. Sleep is essential to healing, so it’s important to keep the tech turned off.
We covered pie-face, but my normal alabaster complexion has a tendency to turn fever-red on this drug, and steroids at this dose can cause photo-sensitivity, meaning easy burns. If you’re a pasty-faced, day-walker like I am, make sure to wear your SPF 60 even if you’re only out for a quick minute. Then again, if you’re also lazy like I am, just don’t go outside.
Don’t skip your regular meds. This isn’t a drug vacation. I know, sometimes I’m just so sick of putting pills in my mouth all day. But it’s important to stick to your routine. Talk to your doc about adding a calcium supplement. Steroids can turn your bones to dust. You still need your bones.
Don’t trust your emotions when you’re on prednisone. And maybe warn your friends and family. Everything is more intense, and on top of it, you’re having a relapse. Know it’s the powerful drugs coursing through your system and don’t dwell on it. If you do lose your shit and bring the drama, you have an out. Blame it on the drugs and apologize. You weren’t you.
This is a WTF symptom that sometimes happens on steroids. I don’t know how to fix this, but the good news is there are actual hiccup support groups for people taking solu-medrol. I mean, if you have MS, hiccups are probably the least of your problems. Then again, when I have hiccups, I make a big fucking deal about it. I cry real tears and ask why everything bad happens to me. Then I plug my nose and chug a glass of water until I’m sure I’m about to drown. If I survive, I log onto JCrew and buy a dress, because I’ve just been through hell and I deserve it.
You might feel like cleaning the gutters, rotating your tires, moving a piano, I don’t know what you’re into, but this is artificial energy and you will have to pay it back. Remember, your body is healing and you need rest to let it recover. As tempting as it is, try not to do the thing (that is to say, all the things) we all want to do the second we feel that unfamiliar boost of strength or energy.
Especially in early relapsing remitting disease (RRMS), steroids can feel like they’re working miracles, but remember, they’re not a cure, and are only prescribed to get you through an attack faster by reducing inflammation. If you’re having a relapse and getting this treatment, hang in there. This too shall pass.
Whether you’re heading to an infusion centre for your monthly dose of Tysabri, getting a course of Lemtrada, or treating a relapse at Spa-umedrol, packing a great bag can make the hours and days of tedious and uncomfortable therapies a lot more bearable. Since there is no fashion mag dedicated to MS (Ms. magazine is sadly, not about de-mylenating in style), I offer you my best attempt at ‘What’s In Her Bag? Hospital Edition’. Because fashion is fun. It might be shallow and materialistic but sometimes stuff makes you feel better. Here’s what I’m packing for my upcoming five day medical séjour.
Patent leather bonus: sleazy hospital germs can easily be removed with a disinfectant wipe.
What’s in there?
Travel Water Bottle Hydration is key when being pumped full of chemicals.
Tech I don’t have to tell you to pack your iPhone but don’t forget your charger. My iPad is loaded with The Mindy Project and Gilmour Girls. (House of Cards is forbidden, because that’s a watch-together show, and I can’t betray The Banker like that.)
Pill carrier Getting IV therapy doesn’t mean you get to skip your regular meds.Pack OTC’s likepain relievers and anti-nauseants to handle unpleasant side effects.
Lip gloss Hospitals can be so dry. Chapped lips are gross.
Hand Sanitizer Hand sanny is key. Immune systems are suppressed. Hospitals, guys. Ick.
Enormous Sunnies In case you want to sleep or be ignored. Or paparazzi.
Blanket Scarf Tissue sized hospital blankets are never enough. Though I do love that they come from ovens.