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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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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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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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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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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