7.30.2019

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. 





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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7.08.2019

9 Things That Will Make Summer Suck Less When You Have MS


It’s summer and I don’t feel like writing existential essays about the plight of a tragic, but beautiful heroine making her way in the world with MS. Feeling tragic is a winter activity. It’s 16 days post-solstice and I want the lazy days I was promised–where I can eat ice cream for breakfast, wear my bathing suit instead of a bra, and stare at my freckles until I’m convinced they’re cancer. If I’m writing anything it’s a reminder to take a nap, to not go camping, to pick up more rosé and to maybe get those moles looked at–if there’s time. 

But unlike teachers and snowplough drivers, bloggers don’t get summers off (we’re an essential service, obvi), and neither does your disease. MS doesn’t take a vacation. Or it does, but it’s your vacation and it’s photo-bombing you in every frame. In fact, summer can be one of the worst times for someone with MS. Uthoff's phenomenon means that many with MS experience an increase in symptoms due to an extreme form of heat sensitivity that can make it so hard to function you’re longing for back-to-school commercials before the final bell has even rung.

Summer can suck when you have MS, but dear god, so cawinter. So instead of a sad story about summer turning into falling and falling turning into a cold early death, I present to you a few of my top picks to help you sail through the season.


9 Things That Will Make Summer Suck Less When You Have MS


1. Safety shoes that don’t look like safety shoes.

I misheels so bad, but there are other options to keep you from looking like you’re auditioning for Shrek The Musical. The sandals you've all been asking about are by Ganter, a company obsessed with foot-health and "natural walking". If, like me, you're currently rocking more of a supernatural stride, Trend-Able is a great resource for what’s cool and can be worn with orthotics. Trend-Able even has shoe options for dudes.

You don't have to smile when your shoe game is this good.

2. Clothing that’s literally cool for you bitches who hate the heat.

If you wanna get your vitamin D the old-fashioned way without wilting like every plant that’s ever been under my care, these cooling towels by Toronto-made (holla!) Koldtec™ will keep you cool like Drake and dry like Dry (the French rapper you’ve never heard of). Trippers get $5 off and a bonus ice-strip with code TRIPPINGONAIR5, or a bonus ice-strip and $14 off the bundle with code TRIPPINGONAIR14.

3. Hot packs for the rest of us.

While most of me knows it’s summer, my dysesthesia-impacted feet haven’t gotten the message. It’s 30 degrees and I’m on my balcony wearing a sweatshirt and down-filled booties. (Yes, I’m also wearing pants, pervs.) I’ve tried SO MANY THINGS to fix my freezing foot pain and these warmers suck the least. The robots at Amazon who package and send them out in July are like what the fuck, Canada, are you really that cold? No, it’s just me. 


Perfect for skiers and shivering consumptives.

4. Face mister.

When I lived in France, I saw people carrying enormous bottles of Evian-filled misters everywhere. I think the whole country needs to discover freon, but there’s no denying the French-girl cool that comes with misting mineral water onto your puffy red face with a $25 brumisateur.

I got this one for free for buying too much make-up. Suckers.


5. The sound of silence. 

There are certain sounds we only hear in summer–the saw of a lawnmower, the smack of flip-flops, my dad yelling “Close the damn door; I’m not paying to cool the whole bloody neighbourhood”. And while these noises are objectively unpleasant, none hurt my ears so bad as a tree full of clamouring birds at the crack of 5:12. Or my douchebag neighbours hosting yet another late-night laugh-riot. Either invite us, or shut the fuck up, Todd. 

These earplugs are powerful enough to drown out my FOMO while allowing me to get the kind of sleep someone with clinical-grade MS fatigue requires.  

Shouldn't even be legal–you're def sleeping through a fire-alarm.

6. Clean-ish hair.

The first symptom listed on the pamphlet you’re given with an MS diagnosis should be dirty hair. Right at the top. Between the heat, the slippery surfaces, the effort it takes to lift a blow-dryer to my head, and the four days a full shower takes off my life, most of the time, clean hair isn’t worth it. I’m currently testing the limits of how long I can neglect basic hygiene and still maintain my relationships. So far, it’s 7 days. The first 4 of which are made significantly less gross with dry shampoo; for which, I assume, the inventor received a Nobel Prize.

My favourite from Aveda. Smells like camouflage.


7. Legitimately clean hair.

When my 7 days are up and it’s time to re-introduce my scalp to water and soap, I’m lucky enough to live in one of a number of cities that has an Aveda Institute where I can get a beauty-school blow-out for about 15 bucks. WHAT?! Ok, so you have to sign a waiver, but even if my student stylist turns my blond to blue, or crimps where she should be curling, my hair will still look better than anything I could ever do.


8. Underwear you can get drunk and pee your pants in.

Technically, alcohol-induced incontinence is not what these knickers were designed for, or at least that’s not the Knix™ marketing strategy. In fact they're marketed more as high-tech "period-underwear" that can handle a little LBL (light bladder leaks).  They may not replace your current continence care, but if you should happen to introduce two Manhattans to an over-reactive MS environment, you would be pretty protected while wearing this gitch. So I've heard. Bonus points for a design that's so good, so normal-looking, you'll never have to mention your unmentionables to anyone lucky enough to see them. 

I'll have two please.


9. Time and energy.

I never travel without Optimus Prime, my cool and comfortable, convertible rollator/transport chair. I surf the walls and furniture on my own time, but when I’m traveling, I don’t wanna waste away in a hotel room, eating $18 chocolate bars, yelling at the slow wifi because I don't have the spoons left to spend my $18 on a Campari-spritz at a tourist-trap bar the way God intended.  

Triumph Mobility is offering TOA readers a $100 discount and a free cane/bag holder on a Rollz Motion with code TRIPPINGONAIR in the US and Canada. Or click here for New Zealand, here for Australia, and here for The Netherlands. 

This kid knows how hot it is.



What are your summer health hacks?

Stay cool, Trippers. And happy summer! 


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5.22.2019

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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