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.