7.07.2017

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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6.29.2017

MS Relapse - 9 Ways to Survive Steroids

It’s not clear if I’m having a true relapse or if this is just faster progression than I’m used to. I’m in that murky relapsing/borderline/progressive, transition period.  Regardless of what this is or isn’t, my neuro and I decided to throw some steroids at it and see what happens. Roll the dice. You know, like most MS treatments.

I’ve had heaps of experience with IV solu-medrol/prednisone, so I know what to expect. These infusions are always a tough week for me, because I am a delicate fucking flower, so I like to have a plan.



Drugs
I never leave my doctor’s office or MS clinic 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, but at least I leave with zopiclone. The side effects of solu-medrol 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. You need them and they help, so ask. 

Snacks
Even with ranitidine, my tummy acts up. Some find their appetites increase (especially on an oral dose), I always have a painful tummy so I keep crackers, cheerios, toast, and ginger ale on hand. Homemade bone broth is better than packaged soups because of the sodium, which you wanna avoid because things are about to get real puffy.
Note: If you can't put down the chips because you love salt like I do, just know that your face is going to look like a pie for awhile and accept it. Don't let anyone take your picture and maybe cover all your mirrors.  

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. 
Note: I still drink coffee because technically, it's a diuretic and also, I don't want to lose my damn mind. Let's face it, I'm gonna be awake anyway, might as well be pleasant. Bonus: My bladder is normally a wreck but it's always more chill when I'm on the juice, making it easier to pound fluids.

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. Throw in some calcium if you’re not already doing so. Steroids can turn your bones to dust. You still need your bones.  

Namaste
Don’t trust your emotions when you’re on solu-medrol. 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
Oh yeah, hiccups. This is a WTF symptom that sometimes happens on steroids. I don't know how to fix this, but in researching this article I learned that 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 will 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. 

Steroids can have impressive effects, especially in early RRMS, they can feel like a freaking miracle. Over time, the results can be less thrilling. Fingers crossed, but remember, they’re not a cure. After 16 years and probable SPMS, I’m chasing that dragon and don’t expect to see loads of improvement but even a tiny one would feel like a win. At least until something better comes along.  

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6.15.2017

6 Annoying Reactions To My 72 Hours In A Wheelchair

The Banker and I have just returned from a fantastic long weekend in NYC. In my day to day life, I use a walker or cane, but long days of traveling call for my convertible walker/transport chair, Optimus Prime. So, for 72 hours I had the concentrated experience of hearing the questionable things people feel compelled to say when they see someone unexpected (young? pretty? cool hat?) out for a push in the park. Here's a sampling of some of the mouth garbage we heard.

    Seriously?


1. "Can she walk a little, or..?"
 
The first questionable comment came at airport security when the dude in charge of scanning our bags decided to speak to The Banker instead of me. I'm not sure why he assumed my ears, mouth, and brain didn't work, but it felt so satisfying to loudly declare, “You can speak directly to me”. He apologized. 

2. "You have to go across the street to the second floor"

We arrived at the Shubert Theater on Broadway, full of excitement to see Bette Midler in Hello, Dolly. Fortunately we got there early, because when I asked about the bathrooms I was told the ‘accessible’ ones were across the street. On the second floor. Of a busy restaurant. It would have been nice to know this ahead of time. Like, when I booked accessible seating for the show. There would be no champagne at intermission. 

3. "Nice seat"

In addition to those who talk to wheelchair users' companions instead of engaging directly, there are those who infantilize and treat you like a little kid; who will touch you and pat you on the head. During my dry intermission, a woman approached me, rubbed my back and told me I had a nice seat. Like I was 5. Was she just trying to be nice? Maybe. I don't care. This is weird. Unless you're my mother, please don't touch me and there, there me. You don't know me. 

4. "Esti intr-un scaun cu rotile"

While rolling down the street, an old Romanian (probably?) woman rushed me saying something along the lines of the above. Technically, I don’t speak Romanian but I'm pretty sure she was saying "You’re very beautiful." Look it up. 

5. "That’s the best way to see New York City."

At the end of a long day, in the elevator at the hotel, a weary woman looked at Optimus longingly and said the above. The Banker was not having it and told her so. She doubled down and continued complaining about her sore feet. The Banker told her not to complain about walking, to someone sitting in a wheelchair. Like, duh. This seems pretty obvi, but you'd be surprised at how many times I've heard some version of this. Lucky for her, we arrived at her floor and she left the elevator in a huff.

6. "This would have been a lot easier if you could stand."

Oh, really? Please, tell me more about how this affects you. This pissy comment came from the crusty TSA employee who's job it was to give me a pat down/deep-cavity search at airport security. She seemed really put out that I couldn't balance without a cane. So, I made a scene. 


Despite this rant, I'm not actually a bitter, old, wheelchair lady, hell-bent on politically correct language. I get it. I'm different and for some reason, people need to point that out. I'm still getting used to this new version of myself, and the reaction it provokes in others can be frustrating. I'm learning to roll with it for the most part, but  I don't think my big, loud mouth is ever gonna let it slide when it's way outta line (TSA lady, I'm talking to you). 

Traveling with MS requires a little extra planning and patience but it's worth it. And, it wasn't all side-eyes and throwing shade. We had many positive experiences. We encountered one NYC traffic officer who was exceptionally friendly and helpful, an excellent ambassador to the city and others who were eager to make sure we had a comfortable and easy time in the city. 

Mad love to The Banker, who is a pro at navigating OP through the city, in and out of cabs, boats and bars and never, not ever, makes me feel like any of this sucks for him. 

New York, I still love you.

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5.01.2017

How to be a hypocrite: MS edition

The morning after a wild night out, I did what any proper party girl would, and sifted through the 4 million photos and selfies I’d taken the night before, deleting any that were blurry, where my hair looked weird, or where my lazy left eye made me look just a little too drunk. I am not a photo-realist. Then, I updated my social media with the most perfect pics of my glam and exciting life, all before brushing my teeth. 

The Banker and I had been to a gala event in the city with about 1900 of Toronto’s coolest and most cultured, art-gallery types. The requested attire was Steampunk, which I nailed, thanks to a crazy hat from my mom’s vintage collection. I knew I looked good and so did everyone else. I got loads of compliments from the beautiful people of the 6ix, of which, for that night, I was one.  

I know this for a fact because I was even paparazzi’d. I was delighted when a media photographer asked if he could shoot me, claiming the hat had caught his eye. This old thing? I immediately obliged, grabbing my cane and striking my sassiest pose after unceremoniously pushing Optimus Prime, my convertible rollator, off to the side and out of sight.

Wait, what?


Under a disco ball and the influence of more than one cucumber martini, for the sake of the photo, I pretended not to know, or need, my rollator. I didn’t think twice about my epic diss to Optimus until the next morning as I reflected back on the evening’s festivities. It went like this: happy memory, happy memory, uh-oh memory. You know, the one that shows up once you’ve sobered up and start scrolling through your mental inventory of the events of the previous night, scanning for shame? Who did you drunk text? Who did you wake up next to? Who did you offend?

Turns out I offended a robot, but that robot has a name and it’s Optimus Prime. We have a complicated relationship and maybe he’s kinda part of me and so maybe I kinda offended myself. 

WTF are you talking about? Are you still drunk?

Maybe.

Last year I wrote this piece in xojane about beauty and disability. I talked about how, as a society, we have trouble accepting that disability can be normal, and even beautiful, because we don’t ever see it represented that way in media and that has a powerful effect on what we collectively believe. Now, a year later, I had an opportunity to be represented in this very context, in a hip publication - to do the very thing I’ve been rallying for - and I totally fucking blew it.

Let’s be real. I’ve been shoving my rollator out of pictures since he arrived on my doorstep, and before that I was ditching my cane for pics that were private, never intended for a magazine or even a blog. In documenting my own life, I’m not trying to re-write history or deny my experience. We all struggle with how we look to the world. Selfies help us influence how we are perceived by others, but what about how we perceive ourselves?  

I don’t like what I imagine others will think when they see an image of me with a mobility aid. If a picture is worth 1000 words, it feels like almost all of them are negative when it comes to looking at disability. I’ve been brainwashed like everybody else into interpreting mobility aids as symbols of my own brokenness. 

But what if they are symbols of perseverance? Of resilience? Can’t I wear that proudly? 

Can’t I just get over myself?   

I want to contribute to the message that disability can be beautiful, I really do - for society’s sake but also for my own. I’d like to be someone who doesn’t have MS, who doesn’t need mobility aids. But I am. I know the best version of myself doesn’t hide this, but handles it with grace. I know this and yet, I can’t promise I won’t do it again. 


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4.12.2017

8 Things You Can Buy That Make MS Suck Less

Recently, a Multiple Sclerosis website asked me and some other MS bloggers, about the ‘one thing’ we can’t live without as world-class Trippers. Most said things like relationships, family, or - barf me to death - hope. Someone even said nature. Nature! Don’t get me wrong - I’m not slamming these bloggers (although I am raising an eyebrow at nature - where spiders live and winter comes from). No. These bloggers are better than me. These are obviously wholesome and decent people who have their priorities straight and their shit together. I, on the other hand, went with something from a store, because I'm shallow and materialistic and anyway, I can’t tell you to love your kids, but I can tell you what’s on sale at JCrew. 

As blogger after blessed blogger blah, blah, blah’d their devotion to raindrops on roses and whiskers on kittens, I was beginning to think I’d misunderstood the assignment. I feel like the website thought so too, because they put my contribution dead last. Probably in the hopes that people would have stopped reading by then. Thankfully, one kindred spirit in the comments section said ‘wine’ and I felt validated. 

But Mitch Sturgeon of Enjoying the Ride said something along the lines of never labeling anything you can’t live without because, as he had learned, MS is a thieving dick that will snatch away almost anything you love. 

I’m paraphrasing. 

Mitch listed his gratitude for his voice, which he uses to tell his wife he loves her (of course), after having lost all the function in his legs and much of the use of his arms and hands. 
Oh. 

He uses his voice to write his book and blog and to operate everything from lights and fans to the tv. Because we live in the future. I’m getting side-tracked here, but I was humbled into my own gratitude for that which remains, and for a moment my cold, black heart was warmed; the cynic in me, subdued.

When that strange feeling wore off, I started thinking about what valuable insights I could provide. Clearly, this crowd knows all about the importance of networks, of support systems, of dogs. Of all the things money can’t buy. Okay, technically money can buy a dog. And money definitely buys booze. But what else comes from a store and can make MS suck a little less?

Guys, none of this is sponsored. All opinions are my own. You hear that Netflix? You're getting yet another free ride.

Speedi-cath. That’s right. While the rest of the MS bloggers were talking about how much they love, and can’t live without, their wives, I pledged my allegiance to a tiny, plastic tube that helps me pee. And I stand by it. I love this product. This insanely expensive, thank-God-my-insurance-covers-it, desert-island-item number one, product. Because if you’re gonna drink, you’re gonna pee, and this little gem is the size of a mini-mascara. The kind you get for free when you buy too much makeup. (Also on my list - too much makeup.)

CleanseMore. While we’re talking toilets, let’s just get the scatological out of the way. It’s hard to talk about bladder problems, and even harder to talk about bowels, but if you’ve got MS, odds are yours is an asshole. I finally found a product that helps me keep things under control. The secret ingredient is magnesium hydroxide. And unicorn tears. Seriously, this stuff is magic. Remember, everyone’s different, so talk to your doctor. 

Align. This is the last poo-related promo. I promise. Align is a high quality, life altering probiotic. Please don’t ever go out of business, makers of Align.

My blender. The only appliance I use every damn day. Breakfast is always a nutritious, fibre-y smoothie because, if I miss it, I pay. I guess I wasn’t done talking about poo after all.  

A shoulder-strap bag. So my hands are free to hold my drink and/or break my fall when I trip on the curb. I got a beautiful one for my birthday from my Brooklyn Bestie, who now lives in Manhattan and I don’t even know what to call him now, but that’s another story. 

Optimus Prime. Shout out to blogger Jennifer Digmann who pledged her love to Grape Ape, her badass wheelchair. I baptized my own mobility aid Optimus Prime because, like a real life transformer he converts from a cool blue rollator to a transport chair. And he can destroy Decepticons.  

Heated Socks. Spring is here but that doesn’t mean I’m not still wrapped in a blanket, typing away through fingerless gloves. My brilliant, battery powered, heated socks are technically for skiers so you know they’re cool. 

Plans. To keep my mind from wandering into Worst Case Scenario day-mares, I try to always have things to look forward to in my calendar. Technically, this is more elusive than the promise I made that you can buy everything on this list. So I’ll qualify it by pointing out that what you can buy is an appropriate outfit for said plans. My xmas party is 8 months away and it’s already in the calendar. Save the date! 12.09.17.

So, what’s the best product you’ve found?


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4.04.2017

Let Me Pee In Your Powder Room: An Open Letter To Toronto Restaurant and Bar Owners

I love my city. Our city. I love our theatres, our comedy, our shopping. I love our big city lights and our big, bold sign. I love so much of what this town has to offer, but more than anything, I love our food game. From poutine to poke bowls, from dim-sum to designer donuts, Toronto is one of the most diverse cities in the world and our food culture reflects that. A boozy brunch with my girlfriends or a night on the town is part of what makes city life, well, city life. Going out has always been part of my lifestyle.

And, for a long time, I took it for granted. 

Until recently, it never occurred to me that something as simple as dinner and drinks might be on the endangered list; that the combination of multiple sclerosis and this city’s inaccessible spaces would make it anything but simple. MS and out-of-date design are threatening the world of going out that I love so much. Like most, I took reasonable access to public bathrooms for granted. 

Part of the charm of Toronto, and of many cities, is old-school architecture. But overwhelmingly, this means most bar and restaurant bathrooms are located in dungeons beneath steep, sketchy stairs. We’ve all agreed that a safe place to pee is a pretty basic human right; restaurants and bars are required to provide potties. I don’t want to bore you with like, the law, or anything, but these regulations only protect a portion of the population.

More than 10% of Canadians aged 15-64 have disabilities (Stats Canada 2012). It’s higher than 35% for persons over 65. That’s a freaking lot of people who have nowhere to pee in the mind-boggling majority of places. 

In Canada.

In 2017.


We don't say "I'm in the mood to pee".

We say "I HAVE to pee".

While I wait for society to catch up, I’ve been coming up with some work-arounds to keep me on the bar stool and out in the world. When I’m invited to the cool new gastro-pub in the latest hipster ‘hood, I call ahead or check the AccessNow app to determine whether or not the place has a main floor bathroom. It almost never does, which means it’s gonna be more of a kangaroo rat-kinda night.  

These bitches don't drink - ever. Look it up.

Kangaroo rat-nights mean skipping slushy pink cocktails and generous glasses of wine. Those are classic pee makers. Kangaroo rat-nights mean ordering saltines and hard liquor, because drinking whiskey by the ounce provides a pretty good buzz with none of the inconvenience of water. 

Whether we're talking about gender, race, or ability, bathroom access can be a yardstick of a society, reflective of who, and what, we value. Before MS struck, my fully-functioning-legs privilege let me live in ignorance of this problem. If we don’t speak up, businesses might wrongly assume that accessibility isn’t an unmet need. 

Look, I get it. First the gluten people, and now this. It can be tough to make everyone happy in the restaurant biz. But aside from it being the right thing to do, business owners have the opportunity to be leaders in the next big social justice movement. Nobody really likes stairs anyway. Even healthy people groan when they realize they have to walk down the stairs to pee, tipsy and in stilettos. 

Still not convinced? Consider this:

Branding: Accessible businesses have bragging rights. Being ethical and inclusive will earn you the respect and repeat business of customers of all abilities. 

Reputation: Toronto is respected for its diversity and inclusiveness, as is Canada. As a business owner you help create and maintain that reputation.

Money: Accessibility not only affects disabled persons, transgendered people, and parents of small children - it affects anyone who wants to hang out with them. Accessible businesses reach more people. More people means more money. Don’t you want more money?

The Law: Many upgrades can be done inexpensively, and will pay off in the long run. The deadline for compliance with the Accessibility for Ontarians with Disabilities Act is 2025, so be forward thinking and do it now, while it’s still cool, before that nagging B, the government, gets all up in your face.

Here's an adorable picture of me.
Don't you want to serve me a drink, and let me pee in your powder room?

There are accessibility barriers beyond bathroom access that haven't been dealt with here. But bathroom rights are a hot topic right now, so while we're thinking about it, debating it and legislating it, because we know how effing essential it is, we must remember to consider everyone. Disability is not a new phenomenon, and sadly, nor is over-looking this population. In an era of unprecedented social awareness, even unintentional obstacles that exclude persons with disabilities from reasonable participation, can feel like discrimination.

I know a well-curated cheese plate and artisanal beer-flight aren't going to fix my MS. But being able to participate in the social world around me is what makes life worth living. So, let’s make a deal - you provide inclusive facilities, and everyone I know will social media the hell out of your business. It’s time to invite everyone to the table and to la toilette. 

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