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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4.26.2019

How To Make A Person With MS Feel Useless

Disclaimer: God bless the Florence Nightingales. Don't let my pissyness and self-absorbed need for autonomy keep you from doing your thing the best way you know how.


Last week my well-meaning Uber driver was falling all over himself trying to help me, telling me repeatedly to take my time (like I have any choice), trying to carry my bag, dramatically taking my arm to guide me into the car despite me assuring him I was fine – and, oh yeah – please don’t touch me.

Aw, he sounds sweet. You’re a monster.

I’m not done. As soon as I’d put my bag down, I turned back to close the car door only to find this do-gooder right up in my grill, reaching around to BUCKLE ME IN. 

Like I was 4. 

Wow, you must be pretty frail and helpless. Obviously you were on your way to the emergency room. Or was it a hospice centre? Wait, are you dying?


It's confusing because I use a rollator.
You should probably talk louder and slower.
 

Maybe this encounter sounds awkward but harmless, nothing more than a nice, if misguided dude trying to help a damsel in distress. But I’m more of a dame than a damsel, and I was hardly in distress. By now, I’m used to heroic displays of assistance and an over-abundance of caution. I tolerate my own discomfort, because what kind of asshole wants to offend someone who’s just trying to help the handicapped? 


Dame Ardra of the Unfuckwithables
(photo cred: Alkan Emin)

Ardramatic much? How about if nobody ever helped you again? Would that make you happy? 

I’m grateful for the kindness of strangers. But this stranger didn’t believe me when I said I didn’t need help. And that’s not cool. What’s worse was that in my mind I’m this strong, independent, gal-about-town; when I saw myself through his eyes, suddenly I was weak, needy, tragic. 

You should probably take the bus.

Woah, let’s not get crazy. Besides, it’s not just ride-share drivers who are going out of their way to get some of that good karma. Lately, it feels like the state of my MS has most everyone convinced I can’t do basic things for myself. Sigh. It’s become a fun game for me to drop something in a crowded room, then try to guess who will be the first to leap up and get it. Pick-up Sticks, Disability Edition.

How do you still have friends?

I honestly don’t know. But recently not one, but two members of my inner posse fell to their four collective knees and attempted to tie my shoelace. While they were fighting over which one of them is closer to Jesus, I sat there feeling like a 4 year old. Again.

Okay Snowflake, but isn’t it true that just this week you accidentally turned the stovetop on from leaning on it, melting your Le Creuset salt grinder, almost setting the kitchen on fire? Didn’t you drop your extra-large blueberry smoothie on the not-yet-purple carpet? Word is that after over-extending yourself to the point of exhaustion, you spent 27 minutes on the floor next to your sock drawer, wishing you could call 911, but you couldn’t reach your phone.




For the record, the salt grinder thing happened months ago.


I don’t know who your sources are, but yeah, that sounds about right. It’s true that having MS means sometimes I legit need help. I know this so bad, I feel like most of my sentences start with “Would you mind…”, and every time I utter a “Sorry but, could you…”, I taste bile. Constantly asking for help with basic tasks is a reminder of just how effed things are. “Can you help me take off my pants in a non-sexy way?” is a real thing I have said.

As MS attempts to erode my identity as a badass bitch, doing the things I still can, even if it’s hard for you to watch, is what I need to do to preserve my sense of self-worth. I know my people love me and want to support me. Message received. But I can’t stress enough that my love language is presents – expensive ones – not unnecessary medical-grade assistance. 

So you want help, and you don’t want help. What the hell?

Imma break it down for you. If you don’t want me to feel useless, just ask if I want help, instead of jumping in and assuming I need it (exceptions include assuming I would like a glass of wine, and assuming I would like another glass of wine). When you do offer to help and I say “No thanks”, bonus points for believing me the first time, even if that means you might have to clean up macerated fruit and flax seeds off the floor. 

Are you serious?

I’m sorry about the smoothie incident. I really am. But the carpet is fine, and to be honest I never loved it anyway. When I’m repeatedly asked, in that squeaky voice full of doubt, “Are you sure you don’t want me to do this basic task that looks impossible for you…?”, the message is that you’re not convinced I can keep myself alive. I see you looking, holding your breath, waiting for me to fail at whatever it is you’re sure I’m going to die trying to do. 


Back off, Boy Scouts. I got this.
(photo cred: Alkan Emin)

While the intentions of my trying-to-be-woke Uber driver were good, just as the intentions of the people who love me are, there comes a point when it’s also important to keep in mind the impact of our actions.  If someone told you you were smelly and stupid every day, you might put on deodorant, maybe pick up a book. When the world repeatedly sends the message that a person is incapable of doing things independently, the risk is that they will start to believe it. 

The day may come when I can’t buckle my seatbelt or tie my shoe, and I will be hashtag blessed to have good people who are willing to help me, but please let’s not speed up the process. Let me continue to believe whatever delusions I need to about myself, until I’m ready to accept and adjust to a new normal. 

Okay. I hear you. But if I can’t make a big show of unnecessarily holding open automatic doors for people with disabilities, how will they know I’m a good person?

One thousand good-person points for asking me to help you from time to time. Don’t assume my suffering, my need, is always greater than yours. I mean, obviously I’m not gonna help you move, or kill a spider, but don’t assume you can’t ask me for something; my skill set is vast. I’m here for you, too. Just ask.









PS As soon as I finished writing this, I went to make a smoothie and this happened. Obviously I have no credibility and you should un-follow this blog immediately.

At least it wasn't blueberry.


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3.22.2019

The New App That Will Manage Your MS Like A Boss





Having Multiple Sclerosis (MS) can feel like a part-time job – a really lousy part-time job. Like, worse than the one I had in high school where I was forced to wear itchy polyester pants and an I.D. tag with my name spelled wrong; a job where my boss regularly complained about my “subpar attitude” when I didn’t wanna do things like be there on time, or clean the store bathroom (that had never been cleaned), or confront the guy who tried to steal a steak by shoving it down his pants.

But you know what my boss never did? Judy never woke me up at 3 am, threatening to make me pee my pants. Sure, my feet were sore after a long shift at the check-out counter, but Judy never inflicted the kind of burning nerve pain that MS causes. Judy never followed me out the door and pushed me off the curb for no reason. Fine, she might have had a reason – maybe more than one – but she never actually did it, because Judy knew that would be assault. But somehow, when MS sends me flying for no good reason it’s a life lesson. 

Unfortunately, I can’t quit MS the way I quit Judy (by passive-aggressively not enforcing the '12 items or less' rule until my name stopped showing up on the schedule – it’s '12 items or fewer', Judy). But there is a way I can feel a little more in charge of my disease, and less like my disease is the boss of me, and it’s all with the help of a brand new tool – Aby App.  

Disclaimer: Aby App is paying me to share this with you, which I guess makes Aby the boss of me, but the joke’s on Aby, because, in case you couldn’t tell by my super-professional tone, all opinions are my own.

Aby App is a one-stop-shop where you can track your medications, your fatigue, your mobility, your mood, your sleep quality, stress and symptoms. You can even track your activities like shopping, or attending a social function; because, this app knows how much energy getting groceries and attending parties can take. High five!

I usually just tell my cat what I’m up to. Why do I need an app for that? 

I’m sure your cat’s a genius, but even the smartest cats can’t help you understand your MS. Or maybe they can, but they just don’t want to. This app lets you generate reports (or as I like to think of them, performance reviews) of all the data you’ve entered, which you can then take to your doctor, or even send by email. These reports can provide a clearer picture of how MS is affecting you.

But wait! There’s more!

The app also provides free workout tutorials, and has lots of juicy articles like, “What to do when MS messes with your sex life”, and even some boring ones like, “Radiological Isolated Syndrome: An MS Precursor?”. It’s everything you want to know about MS, and even some stuff you don’t!

That’s a lot of features. How much is this gonna cost me?

Aby App is 100% free, because if you have MS, you deserve free stuff. 

Tech is cool and all, but I miss the old days when you could talk to someone.

If you’re tired of talking to your cat, the app also has nurses available who will answer your MS questions. (By message, obvi. Everyone knows nobody uses their phones to make actual phone calls. Gross.) 

This sounds good, but is this just a Canadian thing? Like bagged milk and ketchup chips?  

Fun fact! Canada has one of the highest rates of MS per capita. Aby App offers stories and articles with a distinctly Canadian, maple syrup flavour, in both English and en français, but that doesn’t mean we’re keeping this app all to ourselves. In fact, while Aby App is new in Canada, it's already available in the US. In France, Germany, the UK, Italy, and Japan, it's available under the name Cleo. 


What gets measured gets managed and knowledge is power. As the boss of your own health you need to know exactly what’s going so you can see what’s working and fix what’s not. Aby App is an easy-to-use, thorough tool that will let you show your MS who’s the boss. To sign up in Canada click here.









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