11.17.2017

Why Should I Love The Sound Of My MS?

I love my Mountain Equipment Co-op down-filled booties. Made for campers and people who like, go outside, these booties are built to travel from tent to fire in the middle of the night. And, I guess that’s practical for some people, but let’s be real. Even without multiple sclerosis, I'm never sleeping on the ground, and my fireplace turns on with a remote, the way God intended. I have no business even shopping at a place like MEC. I mean, I’m not exactly sure what “outdoor recreation gear” is, and until recently, didn’t know that Co-op means you have to become a paying member if you wanna buy anything. Is MEC a cult or something? 

I don’t speak hippie. 

Fortunately, the membership was only five bucks, and I didn’t have to pledge allegiance to Gaia, or trail mix, or my favourite rock (it’s diamonds). Shopping on-line meant I didn’t have to reveal my city-girl attitude and complete lack of belonging either, which was great, because, I NEEDED these booties. 

MEC’s whole mountain climber marketing strategy is way too narrow anyway. I wear these extreme slippers in my loft apartment all day and all night, 12 months a year. Because, even in summer, my particular brand of MS means that the blood only kinda flows to my feet, and this is the best, and cutest, solution I’ve found for keeping my toes from certain amputation.

Recently though, I’ve begun to question my devotion to these beautiful booties. More and more, I’m dragging my right leg along behind me. I struggle to get it off the ground at all, and it’s fine if I’m wearing socks, but when I’m wearing the beloved booties, there’s a heavy whooshing sound that happens as I drag my foot across the floor. Like the sound of a slow-moving villain in a classic horror movie, it has become the soundtrack to my demise. 

You can put down the megaphone, MS. I hear you loud and clear.

My formerly invisible illness is not only visible, now. It’s audible too. 

Balls.

And, here’s the kicker (if only I could kick). I fucking have to learn to love this sound, to be grateful for it, even. Because who knows how much longer I’ll be able to make it?

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11.14.2017

Ever wondered if you have other diseases?

Recently, Tripping On Air was recognized as a Top MS Blog by Healthlabs and that was super nice of them, but it’s good news for you guys too because, they’re giving TOA readers 10 FREE Comprehensive Health Test panels, where you can find out cool things like, your blood type or whether or not you have anemia. Non-Trippers shell out a whopping 99 bucks for this kinda intel. 

Cool. But, is there a catch? You have to be American. 

What? That’s not fair! Relax, hosers. Canada already gets this for free. 

So, if you’re in America and you wanna find out about your lipids and your liver function, call 1-800-579-3914 and ask for your free comprehensive health test panel. You don’t need a doctor’s referral, you just need to name drop Tripping On Air. They will hook you up with a lab nearby where you can provide your blood sample. You’ll get results by email a day or two later. If you’re one of the lucky 10, lemme know how you made out. Don’t like, tell me how your kidneys are functioning - that’s confidential. But I'd love to hear how their service was. 

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11.01.2017

Dumb Things I Did Last Week In Defiance Of MS

Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway. 

The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre. 

You think you can stop me, MS?

I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.

I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.

The Banker suggested we bring Optimus Prime my convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.

This is what they said:

“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”

Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves. 

The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.

And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine.  And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this. 

And I’m so glad I did. 

In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”. 

So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I'll never do again. It's the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:

This is the last time I’ll do this. 

I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.  

I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.


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9.21.2017

Ten Secrets I'd Tell My Newly Diagnosed Self About MS

If I could travel back in time to when I was 23, and newly diagnosed with multiple sclerosis, the first thing I would tell my younger, stupider self would be to, "Pour one out for those cargo pants. You don’t need pockets on your knees. You have, like, 16 bags." 

And Younger Me would be like, “What’s with all the rips in your jeans? Are we poor in 2017?” 

And Future Me would clap back, “Nice chunky highlights, cough”.

And Younger Me would be all, “Your eyebrows? Are enormous. Is there a muppet trend happening in the future?” This would go on for awhile until we both realized that neither of us could win; our bitchiness being perfectly matched.

After we’d hugged it out and established a shade-throwing cease-fire, Future Me (grown-up, classy and chill), would re-introduce myself to Newly Diagnosed Me (naive, mouthy and hysterical), as the devastating illness expert I’d so desperately needed when I’d first heard the term MS. Here's how it would go down:

Newly Dx'd Me: What the hell is going on and why did this happen? WAIT. Is this because I…

Future Me: No, idiot. You did not bring this on by hosting a wine-soaked Halloween séance. The sudden blindness you went through two weeks later was not God’s punishment for casting a hair-loss spell on your crush’s girlfriend. Trust me. I checked with Science. Sometimes bad things happen to bitchy people, and it’s just a coincidence.

Secret #1: MS is not your fault.

Newly Dx'd Me: I can't stop freaking out. What’s wrong with me?

Future Me: Okay, well, what’s wrong with you is a terrible fucking disease, so your reaction is actually pretty reasonable. Take some ugly dishes to the alley behind your apartment and smash them on the ground. This is a dividing line in your life between before and after. Your old self is dying and how you saw your future has completely changed. Grieve. Get it out. 

Secret #2: You don’t have to pretend MS is NBD.

Newly Dx'd Me: Okay. Now what? 

Future Me: Finish your meltdown and get ahold of yourself. You need to find a new apartment because your neighbours saw you wigging out in the alley.

Newly Dx'd Me: Thanks a lot.

Future Me: You’re welcome.

Newly Dx'd Me: Anything else?

Future Me: Yeah, stop eating canned ravioli and drinking vodka lemonades. Stop buying bags and pay your student loan. Quit making your mom shake off the MS clinic and answer their calls. Spend at least as much time finding the right doctor as you would finding the right pair of shoes. 

Secret #3: Get an MS specialist who isn’t condescending. Get on treatment ASAP.

Newly Dx'd Me: What’s gonna happen to my job?

Future Me: If you wanna buy yourself some time, maybe don’t tell your boss right away. There will be changes, but, the people who can tie their identities to their employment don’t have to do anything to figure out who they are beyond that. They never have to ask themselves, "Who am I without this soul-sucking job that I hate career that I worked so hard for and am passionate about?" Indulge in your identity crisis, then go find a purpose or two. 

Secret #4: Don’t let other people tell you who you are.

Newly Dx'd Me: I won’t be able to do all the things I used to.

Future Me: It’s true, you won’t. I’m not gonna tell you nothing changes, but I can tell you the best is yet to come. That said, don’t bother showing up to your driving test next month. Get a metro pass and move on. Despite what your mother told you about ‘bus people’, it’s not as bad as you think. Plus this thing called ‘Uber’ is coming. 

Secret #5: You are adaptable. You get really good at needles.

Newly Dx'd Me: Needles?! What else?

Future Me: You’ll no longer describe an ‘awesome weekend’ as one where you spend all of Sunday chewing on anti-nauseants and sipping ginger-ale while your best friend barfs out her hangover in the bathroom at brunch. This is just personal growth. This will be hard to believe but: 

Secret #6: Not everything is about MS.

Newly Dx'd Me: Ok, but what the fuck can I do to make this better?

Future Me: First, of all, stop saying fuck.

Newly Dx'd Me: What? 

Future Me: Just kidding. But seriously, stop eating canned ravioli, and drinking vodka lemonades. Maybe do a few sit-ups. Go outside.

Secret #7: Control and manage the things you can. Exercise. Sleep. Vitamin D.


MS is bossy.

Newly Dx'd Me: Why bother? My future obviously sucks.

Future Me: MS is hard, but your future doesn’t suck. Just look at our future hair. And we traded the orange apartment in Steel Town for a loft near a castle. The girlfriend spell didn't work exactly as planned, but we married that crush. Those raccoons that were living on the fire-escape? They’re dead. Now we have a dog. 

Secret #8: You don’t always have to be grateful things aren’t worse, but you still have a lot to celebrate. 

Newly Dx'd Me: Fine, cool hair, but is that a lazy eye? A walker? Are you effing serious?

Future Me: It’s called a rollator, and it’s name is Optimus Prime. He helped you get around Spain. Show a little respect. 

Newly Dx'd Me: Ooh, Spain?

Future Me: I’ve said too much. The point is, you’re smart and capable and resilient.

Newly Dx'd Me: You forgot pretty.

Future Me: Obviously.

Secret #9: Most of the time, you can handle this.

Newly Dx'd Me: Most of the time?

Future Me: Every now and then you lose your shit, and are impossible to be around. And yet...

Secret #10: Your best friends and family are there to carry your shit, to drive you places, to listen to you freak out, to help shoulder this impossible burden. When you think you can’t deal anymore, you give it to The Banker, and his faith in you is enough to restore you; to remind you that you are not alone.

Newly Dx'd Me: I guess, maybe I can do this.

Future Me: You can. You do.

Newly Dx'd Me: Okay, so if you’re from the future, what about lottery numbers, or stock tips?

Future Me: I dunno, I wasn’t really paying attention. Computers?

Newly Dx'd Me: Seriously? Fine. I’ll just take my three wishes then.

Future Me: OMG. Stop touching my belly. I’m not a fucking genie.  



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8.27.2017

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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8.03.2017

Ten Reasons Why Chronic Illness Is One Big, Stupid, Joke

Lisa Walters of Damsel in a Dress, asked me to write a guest post for her popular blog about life with Lupus. Before she received her dx, doctors thought she might have MS. There's a lot of overlap in the chronic illness community, and if you like Tripping on Air, I know you'll love Damsel in a Dress

You can check out the post here

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7.21.2017

The Importance of Pretty: Beauty and MS

Lisa Dryer and Tori Davies-Wompey are on a mission to bring beauty back to women with multiple sclerosis. Not that it went anywhere. It’s just been hiding. 

From the moment of diagnosis, people with MS learn about what they stand to lose. The list of physical symptoms is too long and too depressing to detail here, and anyway, lots has already been written about this.

What the pamphlets and WebMD don’t tell you, is how this disease can erode your self-perception, your self-image. MS can be a straight-up, joy-sucking Dementor, and vain as this might sound to those who’ve never had to think about it, MS can steal your beauty.    

Wait, what? MS can wreck your pretty?

MS takes and takes, and while it can’t actually turn you into a human gargoyle, it can make you think you’re one, and that’s just as bad. Tori Davies-Wompey, one of the women behind #MSbeautiful, says “I think MS steals so much from us. Our jobs, our abilities, our roles as daughters, wives, mothers, whatever it was that you did before that you can't do now”. That’s a heavy list. But why stop there? Maybe you’ve had to give up heels. Maybe you’re covered in injection welts and bruises, maybe steroids have taken over your face. 

Maybe you’ve peed your pants

Any one of these things can make it hard to recognize your inner goddess let alone celebrate her. 

Founder, Lisa Dryer was mid-relapse and struggling with these issues when she knew something had to change. With the help and encouragement of professional photographer and close friend, Al Murin,  #MSbeautiful was born.

Cool hashtag, but what exactly is #MSbeautiful?

#MSbeautiful is an event that brings women together for a no-cost day of pampering and glamour, complete with hair, make-up, and even swag bags. The events are an opportunity for women to support each other, reclaim themselves, and raise self-esteem. Each event culminates in a professional photo-shoot. They've already held successful events in Ohio, Texas, and Wisconsin, with Colorado on deck. Lisa's goal is to be in every state and here's hoping that eventually #MSbeautiful extends past the US border.  

So, Lisa and Tori have MS? Why are they doing this?

Lisa and Tori seem to know that in helping others we help ourselves and when Al Murin passed away unexpectedly last year, Lisa became passionate about continuing the mission they had started together. Tori says her work with #MSbeautiful is rewarding, that it gives her a sense of purpose. Says Lisa, “Looking at happy people makes me happier...But making people happy is even better. Giving people a little bit of fairy tale in their day. Amazing.”

Ok, but like, does lipstick cure MS?

If this superficial need to feel pretty is beneath you, then congratulations, you’re better than me. And if you’re pretty without makeup, well, bless your heart. Go forth and multiply. Personally, I believe more in blow-outs and bronzer than in actual, natural beauty, but Lisa (she really is better than me), believes everyone is inherently beautiful; that the things that make us beautiful extend beyond the surface and include “creativity, talent, smarts…what make you you”. She isn't afraid to go on camera looking undone. She says women need to see that side of it too. It's not about being an idealized version of yourself. It's about how you feel. 

Knowing a bit of glam can’t fix broken self-esteem, let alone cure MS, Lisa’s vision is to provide at least one amazing day, where we can escape a bit. And it’s working. Tori says “feeling pretty…makes me feel just a little bit human again”. Are we seriously gonna deny her her humanity? Get this girl to a MAC counter. 






Wait. Are you saying disability can be beautiful?

One #MSbeautiful participant had this to say “As a woman with Multiple Sclerosis, it is very rare to feel beautiful, or as the center of attention for the way that I look. I am no stranger to getting stared at. Generally, I try to ignore people who look at my walking device, such as my walker or cane.”

Lisa and Tori know this is bullshit. Society has told us a bunch of lies about disability. In a disease where one has little control, claiming one’s beauty is about taking control back. #MSbeautiful is about being empowered to say: 

I’m worth this. I deserve to be here. I deserve to be seen.  

Are Lisa and Tori #changing the world?

Positive examples of disability in media are few and far between. Disability is underrepresented, misrepresented or just plain ignored and women with chronic illnesses like MS are left to conclude that disability, visible or invisible, isn’t part of the conversation, isn’t relevant. Simply put, isn’t beautiful. Lisa and Tori are calling this out and replacing the void with awesome images of real women in all stages of MS.  

When Tori talks about how using a walker, and sometimes wheelchair, messed with her idea of herself, it clicks for me. Tori’s a babe. Tori uses walkers and wheelchairs. Me too. If Tori can be kick-ass, it reminds me that, so can I. 

Seeing her beauty helps me see mine 

and I realize just how powerful this campaign is. When women are empowered, it’s contagious. We need to see ourselves reflected back.

Swag bags and paparazzi? I want in.

These ladies want you to know that disability does not disqualify you from being beautiful. Join the #MSbeautiful Facebook group. Start using the hashtag on your selfies. If you want to participate in an event in your town, look for info on their FB page. 

Hold up. I’m a dude. Can I come too?

No. #MSbeautiful is about women empowering women in a safe space. And while we know you need to feel pretty too, we’re sure you understand. Men are also affected by MS and many have faced similar issues, but this particular project is just for the ladies. So, sorry guys. You’ll have to get your own thing. Might I suggest #MSdudeiful?

Until next time, stay pretty, Trippers.

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