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.

1.17.2019

How To Treat An MS Attack With Steroids And Lies


Steroids can fix this, right?


The day before deciding to start a high-dose course of prednisone to treat a flu-induced pseudo-relapse of my Multiple Sclerosis (MS), I went through my usual check-list of pros and cons. I’m familiar with the intense side-effects and general suckitude of steroids at this dose; and if I’m being real, I already knew I was going to take them, but examining the decision felt like the responsible thing to do. 

Cons
  • insomnia 
  • water retention
  • GI upset
  • sore throat
  • temporary insanity
  • my coffee (and everything else) will taste gross
  • I’ll be out of commission for at least a week
  • FOMO – I might miss my nephew’s b’day party
  • am I finally gonna get that fucking hump? 

Pros
  • warm feet and freestyle pees for a few days
  • maybe I can stop this slow-slide to the ground

The day before I pick up my script, I’m still struggling to convince myself that the decision to give steroids a shot makes more sense than to ride it out. I look for dramatic signs of worsening – the weakness and slowness that normally terrify me are now soothing me into believing I’m making the right decision by taking the poison. The magic potion of prednisone has worn off considerably since the days when it would booster-cable me back to my baseline. I’m dealing with a pseudo-relapse instead of an actual MS relapse, and my formerly malleable Relapsing Remitting MS (RRMS) has evolved into a clear case of Secondary Progressive MS (SPMS). A lot of doctors wouldn’t go near me at this stage with steroids, believing that the risks outweigh any potential benefit.

Which is easy for them to say, with their upright, functioning bodies and absence of need for Hail Mary interventions. 

But this fever-induced set-back had me and my doctor concerned enough to give it a shot. 

Here’s how it went down. 

The Day Before Treatment

I make a bone broth, and stock up on applesauce and ginger-ale knowing how badly steroids mess up my tummy. 

Get my hair washed, buy four new books, and go for brunch with The Banker so he can have a recent pleasant memory of me before steroids make me turn on him. 

still vain, tho


Day 1

I cover all the mirrors so I can remember my face as it was. 

This is my first time getting oral prednisone (as opposed to IV), so I text my blogger friend, Beth (Bethy Bright And Dark) to ask for tips, like what drinking games she suggests for swallowing 62.5 bitter pills in 15 minutes. She’s starting treatment the same day as me, and I feel like it would be fun to place bets on which one of us will cry first. 

Day one passes without incident, and feels similar to IV treatment. 

So far, so good.

15 minutes was not possible. It took me 59 minutes to choke these down.


Day 2

I wake up with a headache after 3 hours and 17 minutes of “sleep”, but my legs are so chill I can’t make them seize up if I try. 

My cheeks are pink and for once I don’t look like a corpse. 

I check in with Beth and learn that “Umbrella Holder” is a job you can pay someone to do when you need both hands on your rollator. I marvel at all the ways MS is creating jobs and fuelling the economy.  

Later, enraged about not being able to get up on a chair to reach a high shelf, I hurl an open box of chocolates into an upper kitchen cupboard. In defiance of physics most of the chocolates stay inside the box which only makes me angrier. 


Day 3

The sweet spot of treatment, I haven’t slept and I don’t care. 

My lack of spasticity is the bomb. 

My balance is drunker than normal and my bowels are MIA, but my feet feel gloriously fucking temperate. I decide (and say it out loud) that I would endure this treatment every couple of months just to have a day or two where my feet aren’t confusingly burning and freezing at the same time. 

Realizing I don’t own any red velvet pants, I go on a frenzied online shopping spree. This feels reasonable. 


Day 4 

My three day treatment is over. I do a timed walk that’s half a hallway less than the day before I started treatment. I feel too tired to have feelings about this. 

My new books are still in the bag; I’m too spacey and in pain to read or even watch TV, so I spend time staring at the wall, willing time to pass. 


Day 5

I wake up after 9 glorious (medically induced) hours of sleep.

After an actual bath I slather my legs in special-occasion Hermès body lotion, because sometimes not wanting to die can feel like a special occasion. 

Just as things are looking up, I watch 2 episodes of This Is Us and feel tricked into a meltdown. I cry my eyes out because Jack, and life, and the Big 3. And. I. Just. Can’t.  

I text Beth. It's a draw. She's melting down too. 


Day 6

My stomach feels like it’s bleeding and I question my ability to make good life decisions. I vow to God and Beth that steroids and I are never, ever, ever, ever getting back together. 

Decide that, for my suffering, I definitely deserve $700 Dior sneakers. 

Don’t actually buy the shoes. 

Maintain I deserve them. 


Day 7

I have to be somewhere at 8:00. In the morning. I knock over my bedside lamp and shatter the bulb into a literal trillion pieces just to give The Banker something extra to do at 7.15, while I lay limp and useless in bed. 

Finally decide to look in the mirror and fail to recognize my stretched and featureless face. 

Notice a new burning pain on my torso and convince myself I have shingles. (I don’t have shingles.) 


Day 8

I manage to leave the house despite feeling weaker and slower than I did before treatment. 

I eat a full meal, including leftover birthday cake from my nephew’s party (that I missed). 

I’m coming out of the effects of the drug, and it’s a huge relief – this was the hardest course of steroids I’ve ever done, but the treatment has failed me. 


Day 10

We have theatre tickets, so I pace myself all day, careful not to blow through too many steps. I take two breaks during the day to lie down for a full hour. 

Briefly wonder if it’s possible that steroids have actually made me worse, but feel too afraid to Google it.

The effort it takes to walk from the apartment to the street breaks me. 

On the way to the theatre I snap at The Banker and cry in the Uber. 


You can't even tell how psycho I am.

I told myself steroids would do something. And that part wasn’t a lie. The lie was that they would do something good. Some small thing to ease the burden of MS; to give me some fraction of increased strength or endurance – even if it’s just a taste; a temporary feeling of how it used to be, or a peek at what potential remains. 

The lie I told myself was that it was worth it. The lie I told myself was that my disease is still modifiable. The lie I keep telling myself is that I have some control or even influence over what direction this thing takes. 


Day 12

I continue to find pieces of shattered lightbulb in unexpected places. 

I appreciate that my coffee once again tastes like delicious coffee. 

I acknowledge that my brain on steroids doesn’t always tell me the truth. 

I try, try, try to believe that just because I’m not yet as strong or as fast I was 5 or 6 weeks ago doesn’t mean I can’t still get there. 

I count my blessings and pack my bikini. I’m spending the next phase of my recovery on a beach with people who love me. And if I can’t walk to the bar, I’ve got Optimus Prime and The Banker to support me. 











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1.01.2019

Resolutions To Ignore And Embrace When You Have MS




I love New Years, a holiday dedicated to glitter and gold, to getting dressed up and drunk and making out at midnight. It’s so ridiculously hopeful to believe the incoming year is going to be better, your best yet, when the logical part of you knows full well you’re gonna start the first day of that year with a splitting headache and barf in your hair. It’s even more deluded to expect better days when you’ve got a chronic progressive illness like Multiple Sclerosis. But here we are, liquored up on optimism (and liquor). 


I'm ready for you, 2019.

At the end of the year it’s natural to take stock of what we’ve accomplished and what’s left to do. When it comes to living with MS, it’s hard not to look back at the past and assess the damage. It can be harder still to look hopefully at an uncertain future. One where many of us are only daring enough to quietly ask the universe that we just don’t get worse.

When we do find ourselves ballsy enough to ask for more, we might be motivated by the feeling of running out of time. Bucket List items pile up with the pressure to do all the things that require strength and vitality 'while we still can'. 

But what’s so great about Bucket Lists and New Years Resolutions anyway? For many, these lists are filled with the things we think we should do, and not the things we actually want to do; the fantasy versions of our lives that feed our egos and let Instagram know just how cool we are.  

Buckets are for washing floors and occasionally vomiting into. They are poor vessels for the safe carriage of our most precious hopes and dreams.

You don’t need a bossy list to remind you of your unmet potential. That’s what parents are for. If you have a chronic illness like Multiple Sclerosis, I’m here to sift through some of the most popular resolutions; to figure out which ones are worth the Bucket List and which ones you can put on the Chuck It List. And if you don’t like it, that’s cool. Having MS should be an automatic pass on all the bullshit things you never wanted to do anyway.


2019 Resolutions: Bucket or Chuck it?


Learn To Meditate: Bucket
MS is stressful. And painful. And exhausting. Meditation can help relieve stress, the perception of pain, and fatigue. I’m a smart person and at least an average breather. So, why is it so hard for me to just close my eyes and move some air? Because, anxiety. Which is precisely why this is the year I’m actually gonna figure this out. 


This session happened Jan 17 and was my attempt at a resolution last year. My own mother just told me "thinking about stuff is just as good as meditation". By "stuff" she means shopping. Someone please keep me accountable.


Skydiving: Chuck It
A classic Bucket List item; they should call it sky-dying, because it’s basically a dress-rehearsal for a terrible and unnecessary death. I am well acquainted with the feeling of free-falling already, thank you very much. 

Alternative: Watch Alive in my centrally-heated apartment while enjoying some non-human based snacks.


Drink More Water: Bucket
It’s tempting to turn into a camel when dealing with a nagging MS bladder. But not getting enough H20 can worsen fatigue and lead to bigger problems than peeing your pants. UTI’s suck, can cause even more incontinence, and infections can lead to pseudo-relapses that can be difficult to recover from. The good news is that Drink More Water is the laziest, easiest resolution ever. If you wanna put something on a list that you can actually accomplish while feeling like a smug wellness expert, start carrying your glittery pink S’well everywhere, and talk annoyingly about how getting your 64 ounces has literally changed your life. 

Change Your Diet: It’s Complicated.
If you’ve got a chronic illness you’ve definitely had someone scream in your face about a miracle food-based cure. There are a tonne of plans that claim to positively impact MS, but there is no universally agreed upon diet. There’s exciting research happening in this area, but if you’re thinking about trying Swank, Wahls, Keto, OMS or whatevs, remember that 65% of vegans eat Burger King when they’re drunk. So. 


Learn a Language: It Depends.
Cognitive function can be a concern for people with Multiple Sclerosis, and one of the best ways to make your brain stronger is to learn a new language. Then again, we’ve all heard that English is the hardest language. If you’re still reading this, then congratulations. You already speak the hardest language. Even if you flunked high school English, you’re probably still pretty good. 

Alternative: Watch a foreign movie. Don’t worry. There are subtitles. Oh, you don’t even want to do that? That’s what I thought. 

Start Flossing: Bucket
Having MS means blaming all my problems on brain damage, but it turns out you can still get cavities when you have a chronic illness, and the only thing worse than having MS is having MS and needing a root canal. Plus, repeated use of prednisone can mess up the bones that support your teeth.   

See a Sunrise: Chuck It.
You know what’s better than a sunrise, right? Fucking sleep. Nerve pain and needing to pee, as well as 7 thousand other MS-related things, could already be contributing to insomniac nights and narcoleptic days. If you have MS, you need sleep more than your average bear. We heal when we sleep, and lack of quality z’s can contribute to problems of cognition, fatigue, balance, pain and bitchiness. 

Alternative: Re-watch Before Sunrise, and eat two bags of Sunchips. 

Life hack: This is a sunset. It's basically the same thing.


Exercise More: Bucket
Fatigue and muscle weakness can provide easy excuses for not prioritizing exercise when you have MS; and frankly, I look like an idiot wearing a Fit-bit. I know this because some confused Normal recently asked me why I wear one. Just because I use mobility aids to get around doesn’t mean I can’t have fitness goals, Joel. Measuring my steps helps me recognize MS trends. Not like cool, Chanel fanny-pack trends, more like personal disease progression trends. 

Climb A Mountain: Chuck It
I said exercise more, not exercise crazy. I don’t know why anyone would want to climb a mountain. I don’t even want to climb the stairs. Did you know it can cost upwards of $30k to climb Mount Everest, and you could DIE? 

Alternative: Literally anything that doesn’t cost money to be cold and maybe die. 


Stop Smoking: Bucket
Boo. Hiss. I hate you. I know. You already know smokers are jokers, and if it were easy to quit you’d already be doing it. I didn’t want to be the one to tell you, but apparently neither does your doctor; because according to some reports he’s afraid of you. But here’s why you should consider it. Smoking can make MS disease progression worse. Smoking can hasten the time it takes to go from relapsing remitting MS (RRMS) to secondary progressive MS (SPMS). The reallgood news is that quitting may delay MS progression. 



Sure, smoking looks cool, but it's just too risky.


Join A Club: Bucket
Feelings of loneliness and depression are 12 times more common in persons with MS. Loneliness can have as difficult and dangerous an impact as the worst of what Multiple Sclerosis can do. If you are struggling, look for resources. If you aren’t struggling, reach out to those who are, and protect yourself by investing in relationships and building your own social capital. 

Write A Book, Go Back To School, Take An Exotic Trip: Bucket
If you have MS, you got a raw deal. Let your dx give you permission to prioritize doing the thing you’ve always wanted to do. Don’t just put your dreams in a crappy old bucket. Realize that Someday isn’s a real day, and put your goals on project status.

Happy New Year, Trippers. What does 2019 have in store for you? 











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12.23.2018

My Worst MS Day. Ever. So Far.



Last Monday was my worst MS day. Ever.

I haven’t had a lot of ‘disease activity’ over the last year. Don’t get me wrong, Multiple Sclerosis affects me every day; but that’s old news, the stuff I’m used to. After coping with, and recovering from, a sudden decline in my mobility last Christmas, I spent most of 2018 feeling grateful for all the steps I’m still able to take, and proud of how I’ve been able to focus on what I can do, without obsessing over scary hypotheticals. 

It’s possible I’ve been a little too hasty in giving myself props. After all, I’ve had Multiple Sclerosis for a thousand years already; I should know a thing or two about living with chronic illness. MS is always going to be hard, but it’s relatively easy to keep your shit together when things are stable.

Of course, this is MS, and stable only lasts so long.

And so it was that last Saturday I woke up in New York City, in town for a Very Important Bestie’s Very Important Birthday, feeling only slightly rougher than usual. I blamed my heavy vocal cords on dry airplane air, a late night, and my attempts to channel Eminem at a karaoke dive-bar the night before. I didn’t have time to give my fatigue too much thought. I was in the Big Apple at Christmas-time and festivities were afoot. 

As the day wore on, it became harder to ignore the congestion that was building in my chest, but ignore it I did. There was no way I was going to be sick during a weekend in one of my favourite cities, to see one of my favourite people, at one of my favourite times of year. I threw on a red lip, shoved a wad of kleenex up my sleeve, and made the sign of the cross, before heading to my VIB’s VIB dinner at a legendary New York steakhouse.

What's her secret? That wristlet is full of caths and there are 18 tissues up my sleeve.

We arrived at the restaurant, ready for good times. There were three or four steps into the dining room, because big cities haven’t gotten the accessibility memo yet. This was annoying, but manageable. As The Banker tucked Optimus Prime, my convertible rollator into a corner, a friendly waiter helped me negotiate the stairs down to the table where our friends were waiting.

We had an amazing meal, my last pleasant memory of the weekend that would be cut short. By the time dinner was over, I knew with a sinking feeling that I was, for sure, coming down with something. What I didn’t know was just how badly whatever bug I was battling was about to start poking the MS that had been relatively quiet this past year, with a stick.  

Enter the pseudo-relapse. 

Unlike a true MS exacerbation that happens when there are new lesions on the brain or spinal cord, pseudo-relapses can be caused by things like infections, increases in body temperature, exercise, stress, lack of sleep, a butterfly flapping its wings. A pseudo-relapse wakes up old symptoms that may have resolved, or makes existing symptoms worse. And in my particular case, on this particular week-end, much fucking worse.

When it came time to leave the restaurant, those same stairs I’d negotiated with a cane and the arm of an anonymous man were suddenly impossible. In the span of a few hours I’d gone from prancing around Manhattan, shopping and posing for pics, to being carried up three stairs in a wheelchair by two burly men. Okay, one was a waiter, and the other The Banker. Neither were particularly burly.  

Though it was cold and drizzly and the hotel was 30 minutes away, I didn’t want to take a cab because I didn’t think I could physically get out of my chair to get into a car. So we walked. I mean, The Banker walked. And pushed. I sat, wrapped in the blanket I’d taken from the hotel, feeling defeated and small after the whole restaurant hoist, ready to sleep it off and start fresh the next day. 

But there was nothing fresh about the next day. 

As I lay in bed, flat on my back, my anxiety turned to dread when I realized I couldn’t sit up, turn over, or bend my legs. At all. I woke The Banker who pulled me into a seated position. As soon as he let go, I went crashing back down; both of us shocked to learn I couldn’t hold myself up. 

I knew I was running a fever, and figured I was getting the flu. I know what that can do to MS. But just because the pseudo-relapse isn’t a real relapse, doesn’t mean it can’t do real damage. Here's something I just happened to have read on Bart's MS a few days before my deep dive into a new level of disability.

“Every time you get an infection it causes your immune system to produce cytokines, or inflammatory messengers, that travel to the brain and boost(s) the activity of the microglia. The hot microglia then exacerbate the damage that MS is doing to your brain and spinal cord. This is why many of you tolerate infections so poorly and often don’t recover back to baseline after a severe infection.”

I’m not exactly a science girl, but it sounds to me like cytokines are Satan’s envoy, sent to provoke the hot microglia into a bar-fight in my brain. None of this is good. The possibility of not recovering back to baseline is what makes colds and flus such a freaking nightmare for people with MS. Like a real life visit from a very dark Dickensian ghost, for a few days this Christmas, I had a glimpse into a possible future where I am less independent (the gentlest way to put it). This past week-end, I got to try on what it feels like to have to ask for help. 


For Every. Single. Thing. 

I got to experience the uncomfortable dynamic of being dependent on my partner, of apologizing for things that are beyond my control, but I nonetheless feel responsible for. I felt the demoralization that comes with the constant please and thank you’s for things I never wanted to need.  


And I hated it.

Until this past week-end, I’d spent the past year feeling pretty kick-ass and mentally strong. I haven’t been wigging out over future disability day-mares. And now I suddenly find myself jolted back into consideration of a future that once again doesn’t feel so improbable. It’s a future that feels like it’s one step away instead of ten. And it’s just too hard to imagine. 

So I won’t imagine it. Or I’ll stop imagining it. Now that I’ve given voice to my fears, I must put them back in a box and light them on fire. As my flu symptoms began to resolve, my strength and independence blessedly began to return. I’m still recovering, and fingers crossed, I will get back to baseline. 

Today at least, I am okay. And that has to be enough. 













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