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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2.26.2019

Why Is Selma Blair So Important Right Now?



Quick. Name three famous style icons with visible disabilities. 

Stumped? Me too. Is it because there are no trend-setting celebs with disabilities? Is it because people who look sick can’t be fashion role-models? Did you at least name Iris Apfel? 

Following last Sunday’s Vanity Fair Oscar party, I’m happy, relieved, and inspired to say I can now name at least one Hollywood fashionista who’s proving that Multiple Sclerosis and disability can be categorically beautiful. 

After going public with her MS diagnosis last October, actress Selma Blair has been peppering her Insta feed with pictures that include a cane. This is a BFD because we don’t typically see disability represented in LaLa Land, or in media in general, at least not in a positive light. Sure, we see villains and victims, heroes and monsters. Lazy tropes that are used to advance the stories of the main characters; stories that don’t really have anything to do with the real life experiences of people actually living with disability. 

Which is why Selma’s Oscars moment was such an important moment for disability visibility. 

As a society we’re conditioned to believe all kinds of negative stereotypes about disability. The words that are often associated with the chronically ill include things like weakness, burden, victim, sad, other. These messed up ideas about disability – and in particular mobility aids – had a lot to do with my own anxiety and shame over being seen with a cane when I’d first started to need one.  

And then Selma shows up at the VF party, winning the night with her Ralph & Russo gown and cape, proudly supported by the ultimate accessory, a custom, patent leather, pink-diamond studded, monogrammed cane by Asprey. 

#want 

Selma’s bad-ass cane was next level; that’s Hollywood. Maybe this degree of bling isn’t realistic or practical for everyone, but fashion is about fantasy, fashion is aspirational. And isn’t it wonderful for those of us in this community to have at least one fab example of the best of what disability can look like?

Of course, some of the tabloid media are still trying their best to spin this story into a tragedy. One headline screamed, “Selma Blair bursts into tears as she’s forced to walk with cane after MS diagnosis.” Fuck you, The Mirror. That is not how it went down. That stunner of a cane did nothing to diminish Selma. 

It empowered her. 

Selma herself described the moment as “indelibly marked in my heart”.

Furthermore, Selma outright rejects the notion of victimhood. “There’s no tragedy for me”, she told Vanity Fair. Open about the real struggle of living with MS, she doesn’t hide how hard it is, but more than that she doesn’t hide herself. This is a woman in the public eye, a working actress and mom, whom we, mere mortals with MS and other chronic illnesses, can look at and say, “Holy shit, that looks like me”. 

Finally. 




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2.18.2019

How To Choose The Right MS Therapy...For You




As a notorious over-sharer and MS blogger, I get asked all the time what medications and therapies I recommend to treat my MS. So when Med-IQ, "an accredited medical education company providing exceptional educational experiences for physicians, nurses, pharmacists, and other healthcare professionals," wanted to partner with me on this subject, I thought, this is a good idea, because I am not an accredited medical company providing educational experiences for physicians, nurses, or anyone else.


Plus, they're totally paying me to say that; this is a sponsored post. (But don't worry, I looked into it, and Med-IQ's story checks out.)

When I was first diagnosed with relapsing remitting MS (RRMS), one million years ago, my doctor sent me home with four pamphlets, instructing me to read them and figure out which disease-modifying therapy (DMT) I wanted to take. I had only heard about MS for five minutes, and I was being asked to make what felt like a colossal life decision.

So, I was like, "Uhm, excuse me Raymond, but shouldn't this be your call? I studied music and binge drinking in university. You are literally a brain surgeon, and I'm feeling a little under-qualified to, you know, make decisions about NEUROSCIENCE."

Turns out, Raymond and I were not on a first name basis.

Since then, I've learned a lot about MS, but I'm still no brain doctor, and that is why you should not ask me which therapy you should take. The good news is, I can help you figure out how to know which therapy is right for you. As always, this is not medical advice. Do your homework and talk to your doctor. 

One of the first things you learn in MS Boot-Camp is that everyone's MS is different. Like so, so different. If you had a twin with MS, their disease course might be the Danny DeVito to your Arnold Schwarzenegger. Heck, your own MS may not be the same from one year to the next. Which is important to remember, because nowadays there are a lot more than just four MS therapies to choose from, and there is no one-size-fits-all medication. You need to find the treatment that works for you.

Spoiler alert: There's still no cure for MS, and none of the available treatments are perfect, which is why you continually need to ask yourself if your treatment is working for you. Disease modifying therapies do just that – they modify the course of MS. They slow it down, but they do not necessarily stop it. 

What to consider when choosing a DMT: 

Strategy

Decide what kind of patient you want to be, and make sure you have a doctor who is on the same page; one who will work with you to make decisions about your health as a team; one who will take the time to explain your options; one who is comfortable prescribing a variety of DMT's; one who will respect your level of risk tolerance; and one who will consider how aggressively you want to treat your MS.

When I went back to Ray and told him which treatment I'd chosen, he said, "No. This one is better." And I was like, "Dude, what the hell? I spent the past two weeks agonizing over this." I'm not sure if my doctor was trying to make me do my research, or if it was some weird test that I'd failed. We had a little tête-à-tête, and ultimately he was able to convince me why his choice was the right one at the time.

MS takes a village, but the most important person on your care team is you.

Monitoring

Managing MS is a life-long commitment, but you don't owe your DMT any monogamy. Once I started having relapses on the drug R-Dogg had chosen, he switched me to the medication I had initially selected. I felt pretty smug about this; like, maybe I could be a neuroscientist after all. 

Being on treatment means constantly determining whether or not your therapy is working for you. This means undergoing annual MRIs to look for new lesions, attending regular follow-ups with your doctor, and paying attention to any changes in your body that could be signs of new disease activity. 

Adherence

Let's face it; none of these drugs are easy; MS is a tough disease. All of the therapies carry side effects and varying degrees of risk. People stop treatment for many reasons. Maybe you feel like your MS is under control, but your quality of life is being impacted by side effects. Maybe you're sick of needles, or headaches, or hair loss. Maybe you don't like your doctor. 

If you're feeling treatment fatigue, or frustration with your physician, better to find a new doctor and consider a new DMT than to just ghost either of them completely. MS can escalate quickly. Stopping treatment without a plan or the care of a doctor can lead to serious consequences.  

Wait and see?

Some people decide to go without treatment for their MS; or to wait until symptoms get worse before taking action. This is an older approach to MS that is less popular now, because we know that early intervention equals better outcomes. If you do choose the "wait and see" approach, it's important to remember that even if your MS feels more manageable than treatment would, things can change at any moment, and damage may be irreversible. Even if you feel good, MS can silently be wreaking havoc. 

Managing MS successfully means being a proactive patient and participating in your own care. You don't have to be brain-surgeon smart to do this. Listen to your body, ask questions, and find your own Raymond – the neurologist who will listen to you, respect you,  work with you on treatment decisions, and pretend not to be annoyed when you call him by his first name. 


But wait! I have more for you than awesome advice. 

Med-IQ wants to thank you too. You could win one of three $100 Visa gift cards for completing this short survey that contains some additional education on MS. 

Do you even know what you could get with a hundred bucks? That's 28 bags of Miss Vickie's chips. That's a 3 1/2 pound wheel of imported parmesan. You could download 100 songs or take your parents to The Cheesecake Factory. I don't know what you're into, but please tell me if you win, because there are two other bloggers offering this deal, and I wanna know that someone from Team Tripping won. (No offense, other bloggers; you're doing great.)

This survey is not sketchy and it's totes anonymous. Email addresses will not be kept, sold, or stored; and will only be used to randomly draw the winners and notify them of their sweet, sweet prize.    



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Disclaimer: I was compensated by Med-IQ through commercial support from Genentech to write about MS. All opinions are my own.