MS treatments

Can MS Really Be Starved To Death?

Warning: It’s about to get all diet-y up in here, and in addition to all the unfair body-image issues we already deal with, for whatever reason, chronic illness seems to invite a whole new level of judgement. Always remember: MS IS NOT YOUR FAULT. If you have any history of eating disorders, this is not the treatment plan for you. This isn’t medical advice. This isn’t even regular advice; it’s just what I’m doing. Always talk to your doctor. 

Can MS Really Be Starved To Death?

There’s a lot of buzz about fasting and ketogenic diets for brain health and MS; and 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, cool, 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. S’il vous plaît.
 
Regular sized hats are so last year.

  

More than a ketogenic diet (which I’ve tried before), 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. 
 
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 for me, 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, 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 instead figured out a smoothie, a soup, and a salad recipe that Dr. Dep signed off on. My FitBit™ (but like, SitBit) app allowed me to log every calorie consumed while simultaneously tracking my macros, making sure my plan was foolproof.
 
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 efforts at research and development. Normally my cold heart wouldn’t care about this, 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.

Can’t talk. Busy.
Finding 5 consecutive days to fit a fasting fake-out into my life was tricky. I didn’t want to sacrifice my social life, or even one week-end brunch, plus I was advised not to do this during a heatwave. That left me a tiny window in July between all-day mimosas and a reunion with my former university roommate with whom it is understood that gossip and catching up means vodka and Miss Vickie’s–the staples of our youth. (Add french fries to this list, because it’s the potato that provided everything she needed to get her PhD and land a job with the Gates Foundation, and everything I needed to drop out and write about peeing my pants on the internet. We’re both killing it.) The point is, I needed to finish this little experiment by sundown Friday at the latest.

Don’t worry, girls. It gets better.

 

See?

 

Here’s how it went down:
 
 
The Ardra Protocol – Diary of What I Didn’t Eat For 5 Days
 
Day One
 

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 are provided by a strawberry, cucumber, and pumpkin seed butter smoothie that I promise myself I’ll make last at least 30 minutes.
12:37 pm 7 minutes later I’m sucking air through a straw like a philistine. Like, you’re not getting any more of that milkshake, David, but you’re definitely giving yourself gas. I don’t stop.

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.

1:01 pm I realize I’m only 4hrs and 16min into this lifestyle and maybe it’s too soon to feel smug. 

1:50 pm I heat up my zucchini soup. Meh.


4:04 pm I snack on a green apple and am reminded of why I never buy green apples.

What kind of sociopath chooses a green apple? Gross.

6:15 pm Dinner is a big salad that includes 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 are so good I feel like I’m doing something wrong. 
Day 2
 

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. High five!

 
1:45pm I’m already sick of this zucchini soup.


3:12 pm I have some green tea, and no green apple. Apples are only allowed on Day One where you’re expected to ease into things, and a 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.   


Day 3
 

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 room’s a bit spinny and I make my smoothie as fast as I can because I’m pretty confident I’m about to barf. I suddenly remember brushing off Dr. Dep’s warning not to do this at a time 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 My afternoon requires that I not faint or barf, so I decide to swap my dinner for my lunch and eat my big olive-y salad now.


Who says you don’t win friends with 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 superhero leaps into the intersection I’m waiting to illegally cross, throwing up his hands in a ridiculous display to stop traffic in three 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 dried fig, 5 cherries, and a small square of dark chocolate.

 

8:03 pm I send back the fig and ask 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.


11:00 pm I put an emergency dried fruit bar and a glass of water by the bed, just in case I’m shaky in the morning.   

Day 4
 

8:55 am Last night’s fig binge was a good idea, and this morning I feel fine. Bored with food, but fine. 

9:34 am I outsmart my body and have my smoothie before I have 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 eat some homemade kale chips with more salt than the Dead Sea. I briefly wonder what Miss Vicky is up to. 

 
Day 5 
 

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 stuff 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 five days. 

2:15 pm I feel hungry, and I try to embrace it, imagining that this is the feeling of my body repairing itself. It’s not unpleasant when I think of it this way.

3:00 pm I discover that napping is an excellent way to enjoy not eating, and then feel pissy at myself for not having hacked this sooner. 


11:00 pm It’s the end of day 5. I did it. I’m in good spirits and feeling like I’ve done something constructive for my MS. 

 
The morning after my five days on the Ardra Protocol I step on the scale and find that I’ve lost three pounds. 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 that 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 three pounds in pancakes and pie as soon as possible.
 
I waited a full 4 days to eat this.
 
When all is said and done I give this 5-day plan 5 stars. Compared to the treatments and therapies that have left me with side-effects like injection site reactions, migraines, flushing, fever, flu-like symptoms, hives, actual vomiting, rash, and secondary-autoimmunity, the AP left me a little hungry, maybe a tad preoccupied with food; but like, that’s it. I wasn’t even 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 my 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 every 28 days’ish. Depending on my brunch sched, natch. 
 
In the meantime, I will leave you with this Ted talk by Valter Longo, the OG of the FMD. 

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5 Ways Hope Can Suck When You Have MS

Make a wish and then prepare to get burned.
 
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.  
 
Not convinced? Allow me to break down the dark side of hope:
 
1. Hope can be a 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. 
2. 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. 
3. Hope can make you 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. 
4. 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.
 
5. 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.”
 
 
 
 
 
 
 
 
 
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How To Choose The Right MS Therapy…For You

How To Choose The Right MS Therapy...For You

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: 
 
Strategy
 
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.
 
Monitoring
 
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. 
 
Adherence
 
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.    




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Disclaimer: I was compensated by Med-IQ through commercial support from Genentech to write about MS. All opinions are my own.

The 5 Frustrating Ways Lemtrada Didn’t Cure Me

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


My Hair
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. 

Secondary Autoimmunity
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. 

New Friends
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 donut and 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.








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Mad Diary of an MS Relapse. Steroids Made Me Do It.

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.

Dear Diary, Shit’s about to get weird. 

Day 1

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!

Day 2

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. 

Day 3 

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! 

Day 7

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. 

Make plans for the weekend and keep going. 








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How To Survive Prednisone For An MS Attack

Side effects include buffalo hump, moon face, and extreme hiccups. I wish I were making this up.

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. 

Here’s how to be ready:

Drugs
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. 

Snacks
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.  

Fluids
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. 

Sunscreen
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. 

More drugs
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.  

Namaste
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.

Hiccups
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. 

Netflix
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.  








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How to Pack the Perfect Hospital Bag

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 like pain 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. 
  • Fingerless Gloves Cold arms mean rogue veins. Guys, I’m always cold.
  • Litt Trashy gossip mags were made for days like these. 
  • Journal For recording any drug-induced moments of genius.
  • Snacks that won’t make me barf Vomit suppressing snacks include ginger chews, ginger cookies, ginger ale, my ginger bestie. Basically anything from the ginger family.
I’ll also be bringing my mom (because The Banker’s gotta bank), who will no doubt have her own giant tote in tow. She always carries Emergency Chocolate. She was a nurse, so. 

What’s in your hospital bag?

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Guinea Pigging

Four months after my most recent attempt to outsmart MS, a specialist told me that was it. I’d exhausted all multiple sclerosis treatment options and my best hope was to find some cutting edge study or wait patiently for science to catch up. And P.S. the treatment I’d just received precludes me from most studies. I’d sensed this was coming. Over the years I have given myself more than one Extreme Makeover – Immune System Edition and while it is impossible to say how much or how little impact all this tampering has had, it is fair to say that nothing has managed to put the brakes on. Stupid MS is smarter than me. And so, as I have done many times before, I began to adjust to a new normal, this time trying to make peace with the reality of my bullshit Frankensteinian gait.

Then just six weeks later and much to my surprise, my conservative neurologist recommended an off-label, experimental treatment with a side order of the MS carrot. That dangling bit of salad on a string to which every relapsing remitter is beholden. The vegetablication of the possibility that despite all odds, with some aggressive intervention and a decent amount of risk, things could maybe suck a little less. 

In addition to my regular injections and infusions of disease modifying drugs, my relapses have been treated with trips to the ER for countless rounds of IV solumedrol. The first time I experienced some steroid induced recovery it felt like a freaking miracle. I was blind and then I saw. I was lame and then I danced. I’m talking LITERALLY, people. Like a magic trick of biblical proportions. So what if it meant a little osteoporosis? Steroids were the carrot and I was the hungry pony.  Over the years I would make this deal with the pie-faced devil again and again.

Here’s the thing. 

Carrots are okay. For a vegetable.



Their medicinal value is questionable at best. The ways in which we plead and bow to them is frankly, embarrassing. Someone should tell the horses not to lift another damn hoof until those dried up carrots have been marinated in maple syrup, dipped in cake batter, deep fried and coated in cream cheese icing. Because that carrot is a shifty lie-teller. With each relapse the promise of remission is dangled a little further away as I creep closer to a more progressive MS. The carrot gets blurrier and just a bit more out of reach. But it’s too late. Once the carrot has been tasted it cannot be resisted. The possibility that whatever is happening to my brain and spinal cord could be undone is just too tempting. Never mind that this is an incurable illness and that the only guarantee steroids are handing out is insomnia, achey joints and six pounds of water weight. The carrot wants you to ignore the risks and bank on the reward.

Relapsing remitting MS is a turbulent trip between periods of utter devastation and unbelievable gratitude for even the tiniest bit of improvement. Over the past year or two my ability to recover has become highly dubious. My luck is running out. Even my status as relapsing is debatable. The carrot has broken its promise. 


But now, temptingly, there is a new vegetable on the menu. An experimental treatment, rife with its own unpleasant side effects and whose efficacy is a long shot at best. Nevertheless I will put my life on hold for a little while and submit to this guinea pig status, embracing the headaches, nausea and barfing. I totally needed to lose six pounds before Thanksgiving anyway. Because it might help. How? Pfft. Nobody knows. That’s not important. It is the best (and only) offer on the table right now. And a month ago I thought my bargaining days were over. 

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Blood Donut Day

I love tradition. I am devoted to ritual. From big holiday and birthday celebrations to ushering in the seasons with tree-tapping, open-toed shoes or apple picking, I embrace it all. Mini weekly rites like Martini Mondays, Sunday Family Snuggle Time and Saturday morning coffees on the balcony are all part of the solemn sacraments that help guide us through life and cultivate the identities of our relationships. They bind us together. They mark our days. They make us pay attention. There is no occasion too big or too small for which a glass of pink champagne cannot be justified. Of course, not every day can be a bar mitzvah but hear me out because I am about to give you a whole new reason to eat sugar.

Each month for the next five years or so, I am required to subject my teeny tiny veins to a blood draw. Every. Single. Month. This is because I had some pretty serious MS treatments with some potentially long term side effects. How serious? I had to sign a contract promising that no matter where in the world I may be, I will do this. Every month. For five years. A bossy nurse calls every 28 days to issue me a stern reminder. It is the only solid five year plan I have ever had. 

Now, I don’t mind the pain of the needle. In fact my eyes roll fairly far back in my head when people freak out over a basic blood test. Once you have to deal with real shit you tend to toughen up (I’m looking at you, F). What I don’t like about these tests is the trek through the lab crammed with approximately 482 sickly people, most of whom seem bent on exposing my still depleted immune system to their strep throats, whooping coughs, and tuberculosis. I am convinced there is always at least one person in that hot, crowded room being tested for plague. Bubonic or Pneumonic, it doesn’t really matter. I hold my breath, say a prayer and throw all of my clothes in bleach as soon as I get home. 

The other anxiety about this monthly obligation is the stabby suggestion that I have taken some risky chances for the possibility of improved health. I have made a hot deal with the devil and getting tested for the potential consequences reminds me that something along the way could go really wrong. I used to subscribe to the ‘only one disease at a time’ philosophy, but doctors assure me that’s not a thing


At one of my recent trips to the clinic, was a brave little guy who needed quite a number of prickly tests himself. His mother came armed with presents and treats to get him through it. She promised him the biggest reward of all when it was over. She didn’t tell him not to cry. She didn’t need to reassure him he wouldn’t contract bird flu simply by walking in the door. She held his hand while he squealed, told him he was brave and all of his suffering and distress seemed to vanish the instant he was presented with his final reward, a beautiful cupcake covered in a rainbow of sprinkles.

Could this kind of negotiation and trickery work for me?

While the answer to my entirely rational fear of contagion is of course to continue to coat myself in hand sanitizer, restrict my exposure to WebMD for the fortnight before my appointment and avoid making any eye contact once at the clinic, there still exists a need for comfort in the face of this enduring and unpleasant routine. Inspired by the little boy with measles or malaria or whatever it was he had, I decided to turn this experience into a decidedly more delicious one.

Enter donuts. 
‘Is there anything they can’t do?’
(Homer Simpson)
Conveniently located right next door to my blood clinic is a super fancy, hipster, upscale donut joint. Here’s the new routine. The Banker drops me off at the clinic and while I am being poked he picks up a couple of lattes and some designer deep fried pastries. Carrot cake with cream cheese icing for me, and red velvet for him because we are in this togetherThe whole time I am in the clinic, I am thinking about my delicious reward. An indulgence made sweeter given my mostly whole, organic foods regular régime. I barely even notice that the person in the waiting room next to me for sure has a fever. Now I look forward to blood draw day or as it shall henceforth be know, Blood Donut Day. These are called coping strategies, people.

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The no-good, ignorant, annoying advice, everyone with MS can expect.

Have you tried kale, tho?

Today I received some advice, unsolicited of course, from someone who is neither doctor nor patient, but who claims to know some ‘medical professionals’. It went a little like this: “I don’t know if you’ve ever thought about your diet before but, eating potatoes is really, bad for MS.”


Over the years, these people who, I presume, mean well, have felt it necessary to educate me on everything from costly and invasive surgeries and therapies in foreign countries, to extreme diets, to impassioned claims I should make sure it really is MS because the internet, or some headline, says drinking diet soda can produce symptoms identical to MS. I’ve heard all about the best friend who cured herself with an animal protein diet as often as I’ve heard about the vegetarian in complete remission. 

So, what’s wrong with me? Why am I still sick?

The advice one receives with a chronic illness like MS is not limited to pushy diet and intervention tips either. I’m constantly being told, by people with uncomplicated bodies, to ‘keep fighting’ and, to ‘not give up’; because a positive attitude will for sure keep me from needing a wheelchair. (You lazy, giver-upper wheelchair-users, apparently have no one to blame but yourselves.)


Silent Killers


If only it were that simple.

These overly concerned experts often barely know me and, I suspect, if questioned, would be hard-pressed to provide an even accurate-ish description of multiple sclerosis. The people who mean well are convinced they have the answer.  

Here’s a little of what they don’t know.

Diet soda is disgusting.

Whatever the magic potion these people are pushing, chances are I already know about it. I’ve been on all the drugs, supplements and diets. I’ve sought out the experts and hopped on more than one plane to more than one country for tests and treatments. I know all about stem cells, bee stings, cobra venom and hyperbaric chambers, hookworms and hypnosis. I KNOW ABOUT HSCT. I’m an educated, informed, proactive patient. 

I know more about my disease than you do. 

Random stranger, I know you’re not actually a patronizing idiot. I know you just wanna help. But here’s the thing. You don’t have to fix me. I really do know you mean well. It’s just that, rest assured if it were that obvious to not be this fucked up, I would already be doing it. Times ten. 

The people who mean well are not the worst people on earth, just the most annoying. In a world where everyone knows a guy or a guy who knows a guy whose gluten-free sister cured herself with a trip to Lourdes, it can feel frustrating to confront such an oversimplification of a serious problem. My serious problem. But how about I make you a deal? I will feign interest in the story of how your coworker has MS but is totally fine and when you tell me about the worst thing you’ve ever had to face in your whole life I will tell you how to quickly and easily solve it with positive thinking, a litre of cabbage water and whatever the opposite of aspartame is.







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