Month: August 2020

13 Survival Tips When You Hate Getting An MRI

19 Comments / Life hacks / August 24, 2020
A pretty blue brain on a pink background. If you hate getting an MRI this computerized brain is a soothing image.
If you have MS, there’s a good chance you’ll have at least one MRI a year, so it makes sense to figure out how to hack your annual Picture Day.

13 Survival Tips When You Hate Getting An MRI

An MRI is an imaging technique that uses magnets to take pictures of your brain while it’s still inside your skull. The hocus pocus happens in a giant scanner that’s part half-open coffin, part world’s largest photocopier; and, you’d think we would have figured out how to make them less scary or loud by now, but science is busy working on other shit, like this knife made out of poop. The images produced by an MRI can be used to help diagnose and monitor changes or progression in MS.

Ardra in her grade 8 school picture. She has an aggressive perm and hasn't yet grown into her buck teeth. These are the awkward years.
Nailing Picture Day since 1991

When I went for my first MRI, 19 years ago, I had zero chill about an experience that felt like being trapped in a screaming tube while it tried to Morse Code my brain damage. Now I’ve had at least 25 MRI’s (my most recent one was last week), and I almost look forward to them. I mean, the world is covered in plague, so the bar has been lowered on what qualifies as an exciting outing. I got to leave my apartment, and I got to lie down for an hour, so, that feels like a win. (Note to the MRI people: a lollipop would have been nice)

Getting an MRI isn’t painful or invasive, but it can be stressful.

Here’s how to get ready for the most detailed selfie of your life.

Ardra is wearing a Covid mask, a hospital gown and ID bracelet. She is standing in the MRI change room. She has added graphics of an MRI machine and brain with legs to the image.
If you didn’t take a selfie did it even happen?

Dress Comfortably

Rule number one of MRI-getting is you must be free of all metal and electronic devices, because according to urban legends, that could make you die. Check out this video to be scared off of earrings forever.

Holy shit, is this real? 

Who am I, Bill Nye? All I know is that I once had to have an emergency MRI while I was wearing microlink hair extensions. The Banker had to run to Canadian Tire to buy pliers (we’re not really toolbox people), so he could urgently remove six million metal tubes from my head. FML. Now I wear tape-ins.

And speaking of urban legends, fellow Tripper Kathy told me her last MRI had to be stopped because her anti-frizz hair product had some kind of metal particles in it. She had to wash her hair in the hospital sink (ew) before they could proceed.

A close up picture of a hair product called Frizz Ease.
silent killer

But back to wardrobe…

Every centre has a different policy, and some are cool with letting you wear track pants and a sports bra; but, my current facility has trust issues and they make me strip down and gown up. To hack this, I wore a simple knit dress (no buttons, no zippers) to my recent scan because getting dressed and undressed and then dressed again is for people who have the kind of energy to put their legs through leg holes more than once a day. And now I need a nap just thinking about it.

Wear the right mask

Despite being asked many, many times to confirm the absence of piercings, and past surgeries, and metal on my person, I was not asked about my Covid mask which in fact has a tiny metal bendy thing over the nose. Good thing I watched that cautionary video.

A selfie of Ardra wearing a ruffled Covid mask. She is in her library.
Fashion Safety First

Check your mobility aid

Is carbon fibre magnetic? Nobody knows. But if you use a mobility aid, you won’t be able to bring it into the room with the scanner, so consider bringing your wooden cane with your rollator or wheelchair if you can walk a few steps. Otherwise, you will be transferred in one of the MRI-safe chairs provided, or like me, you will be offered the sweaty arm of a helpful, but—I can’t stress this enough—sweaty technician.

Ardra stands outside, next to some graffiti. She has a white rollator and her dog is looking at her adoringly. She's pretty sure that you can't even bring a service dog to your MRI no matter how much you hate MRIs.
Leave your rollator in the hall and your dog at home.

Play the MS card

I don’t know what it’s like where you live; but in Canada, we’re short on  MRI scanners, which means we run the ones we do have 24/7. If you get an appointment at 3 a.m. on a Tuesday, try to sweet-talk whoever’s booking you, because 3 a.m. is a garbage time for everyone except vampires and werewolves and you don’t want to run into either of those assholes. If you’ve got MS you’ve got enough problems.

Eat and drink before getting an MRI

Your doctor might want you to have contrast dye with your MRI to help distinguish any new or worsening damage. When this is indicated, you will be injected with something called gadolinium at the half-way point of your scan.

Hold up. I thought you said painless and non-invasive? 

The point is, you should eat a little something and drink some H20 before your scan, because you want to have available veins. My last scan was at 6 a.m. (barf), so I traded my breakfast smoothie for a granola bar, and my coffee for 16 chocolate covered espresso beans, because I am never in the mood for a caffeine detox.

But don’t drink too much

Your scan will take about an hour, and you don’t want to have to pee. Always go right before your scan, but don’t sweat it too much. I mean, they give you a panic button, and I assume that’s what it’s for.

And then hydrate LF

If you were limiting fluids to avoid peeing your pants and especially if you’ve had gadolinium, it’s super important to drink lots of water after your MRI. Your kidneys will thank you.

Accessorize

You will be given headphones and off-brand earplugs. I like to bring my own earplugs because I’m fancy and high-maintenance they actually work. I also like to bring a sleep mask, so if I accidentally open my eyes I won’t be reminded I’m trapped in a machine with a Hannibal Lecter-style cage around my face.

Ardra's MRI. It includes the eyes and they are pointed upwards. It's funny which makes her hate MRIs less.
Literally always rolling my eyes.

Choose your music wisely

I feel like the option to listen to your favourite music accompanied by the sound of a jackhammer just makes you hate your favourite music.

Stay in touch

Your technician will be able to communicate with you throughout your appointment. In my experience, they don’t enjoy my jokes, and they really don’t enjoy talking about their feelings. But, if you want them to keep you updated about how much longer you’re gonna be stuck in the scanner, they love that shit.

Medicate

If you’re super anxious, you can ask your doctor for valium or something similar ahead of time. Keep in mind that you won’t be allowed to go home alone, but do what you need to do to get by.

Check your results

Lots of places allow you to check your results online. But be aware that disappointing results can heighten anxiety. Keep in mind that the number of lesions you might have doesn’t necessarily correspond to symptoms or disability. If you suspect your news might be hard to hear, consider having a trusted loved one with you when you log on, or wait for your neurologist to break it down for you, when they can answer all of your burning questions.

Reward yourself

MS is hard. MS is a job. Part of the stress of getting an MRI is that it’s a reminder that you have a crappy disease. I like to treat myself like a four year old and give myself prizes on patient days. Little rewards for having to do so many unpleasant things: a latte, a cookie, a new car. I don’t know what your budget is. 

Getting an MRI is a routine part of having MS, and if it sounds like I’m complaining, it’s because I am. And if it sounds like I’m exaggerating, it’s also because I am. I promise you MRIs are safe, and even if you feel trapped, you really aren’t. The techs know what they’re doing and will prop you up with pillows and cover you in flannel blankies to make you as comfortable as possible. MRIs are an important diagnostic tool, and even I can admit they’re better than the hot bath test we had before they were invented. Plus, it’s pretty cool to see where my MS lives. If you’re not sold on how even damaged brains can be beautiful, check out Lindsey Holcomb’s work. I’ve been meaning to have her do my MRI portrait since I first heard of her; and, now that I have a fresh MRI I’m hoping she’s available.

Ardra's signature and Tripping On Air logo which is a pink drawing of a woman in heels with a ponytail who is falling backwards. She's holding a champagne flute which she doesn't drop because, priorites.

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What You Need To Know About Toxic Targeting And MS

26 Comments / Rants / August 2, 2020

*A version of this post first appeared on Aby, the app for people living with MS.

What is toxic targeting?

Toxic targeting is the offering of unsolicited advice in an attempt to influence a person regarding their disease-management, and if you have MS, you already know how common it is to hear about how kale and wishful thinking will solve all your problems. Toxic targeting is the oversimplification of a serious medical problem by means of unwelcome, often aggressive, and/or uninformed advice. Toxic targeting is a micro-aggression because it’s usually the result of good or neutral intentions.

Thank you! I’m pretty sure these cause liver failure, but it’s cool ’cause. You meant well.

From the moment you’re diagnosed with a chronic illness like MS, you become the focus of an overwhelming amount of advice from friends, family, even strangers. People with MS are regularly counselled to be positive, to eliminate certain foods, to try a range of diets, drugs, and supplements, even to seek experimental procedures in foreign countries. 

Why does toxic targeting suck?

Regardless of intent, the phenomenal amount of advice that comes with an MS diagnosis can be considered toxic because of the negative impact it has on the people receiving it. 

Repeatedly being told what to do and how to manage your body is annoying. It’s also dangerous. Most of all, it’s nobody else’s business. MS is a complex and difficult disease. When information is ripped from headlines or shared via third-hand anecdote, it’s often inaccurate. Even when data is reliable, it may not be relevant. Everyone’s MS is different. 

When I get advice that suggests there’s a simple solution (give up gluten!), the implication is that I’m not doing everything I can to deal with my MS; that maybe MS is my fault. The implication is that my doctor’s not that smart, or that maybe MS isn’t that bad (we all get tired). 

When we are, again and again, encouraged not to let this disease change us, and to just think positively, not only are we denied a bit of room to grieve and process our loss, there’s a feeling that if our will is strong enough we’ll avoid getting sicker. If we eventually do need mobility aids, we’re afraid we’ll be judged for having given up, for not having tried hard enough. We may even feel we’re letting others down.  

When we’re asked if we’ve tried different diets, supplements, or medications, we’re, in effect, being asked to disclose personal details about our choices. Sometimes we feel we must defend what we and our doctors have decided to do. Expecting someone with a chronic illness like MS to prove just how sick they are is invalidating and emotionally exhausting. 

What can you do about toxic targeting?

Recognizing that most people just want to help, and accepting that you can’t control how others act, can sometimes be enough to let you smile politely and say, “Thanks for thinking of me. My doctor and I have a plan”.  

It takes practice to handle toxic targeting with grace, in a way that lets you leave encounters without resentment. It’s okay to say, “Actually, I get this kind of advice all the time, and it’s really exhausting.” Thank them for their concern, and if the advice is coming from someone who truly wants to support you, consider letting them know exactly what that might look like. “Thanks for caring. What I really need help with is walking the dog, and picking up groceries.” And if you really want to shut them up, “Do you want to clean my bathroom?”.

If you insist on offering me something toxic, I’ll have a martini. Hendrick’s. Extra dry.

Toxic targeting is common on social media, especially in drug and diet groups; where, unfortunately, people from within the MS community sometimes forget that just as everyone’s MS is different, so is everyone’s response to interventions—what worked for them may not (will not) work for everyone. Avoiding toxic targeting online means ignoring comments and staying away from content that isn’t helpful.  

My reaction when someone comes at me with the latest miracle cure.

Moving forward

Illness is still an awkward subject for many. It’s no small task to communicate that this kind of advice is not only unhelpful but damaging. Accepting that there will always be people who say the wrong thing may keep you from pulling your hair out. Rest assured that attitudes are starting to shift. Social media has given the MS community a powerful voice, and on those days when you don’t feel like smiling and nodding, it can be empowering to share your experience on a broad platform that just may change a few minds.

Toxic targeting isn’t limited to the chronic illness experience, and most of us have likely been both the giver and receiver of unsolicited, unhelpful advice. When we know better, we do better; and hopefully, having the perspective of being on the receiving end of so much unwanted guidance means we’re less likely to inflict these micro-aggressions on others.

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