Of 7 Things No One Tells You When Diagnosed With MS

Dancing With MS

I may have MS, but I can still dance to the fullest.

At the ripe old age of 21 I noticed the left side of my forehead was numb. Not the kind of numb where if someone were to stab me in the face I would feel nothing, more so the tingly kind of numb that we all experience when our foot falls asleep. Like many, my first thought wasn’t, “Hey! Something serious is wrong.” Rather my mind was more along the lines of, “That can’t be right, maybe it’ll feel normal if I touch it again … nope. How about now?”

The numbness lasted for several days, so my primary physician referred me to a jack-ass of a neurologist, a man with zero social skills and not an ounce of empathy, but at least he sent me off to have my first of many-many-many MRIs.

Here’s what I was told before going into the giant tube, “It might be Multiple Sclerosis, or it might be a severe migraine,” you can guess which one I was hoping for. But alas, it wasn’t a migraine. And as my robot doctor proceeded to tell me all about my disease, with all the medical jargon he could muster, I fell into shock as my world went silent.

Its been roughly 5 years since that terrible day, and now I’m living a very happy life. Being forced to be so aware of my mortality at a young age has given me a thirst for life. It’s made me more actively seek out the activities that make me happy, people who are on fire just to be alive, and not limit myself because I have a condition. But it took me awhile to get to this point, so if you or someone you love is still struggling, please be patient and/or offer support.

Here’s what no one tells you when you’re diagnosed with MS.

  1. People say the worst possible things:

    The most common thing I hear when I tell someone that I have MS is, “Oh my friend/parent/aunt/etc has MS, he/she is in a wheel chair now.” Other common variations include details about how their loved one is in too much pain to do anything or that they lost their vision. Sometimes they confuse Multiple Sclerosis with Muscular Dystrophy and look at me with curious eyes.

    A lot of people will assume that any and every health issue I have is MS related. They mean well, but their ignorance does drive me crazy. I’ve learned to calmly say, “No, this has nothing to do with my MS.”

  1. Don’t be afraid to fire your doctor:

    My first doctor was terrible, so my family put our feelers out there and now I have this badass doctor. She’s personable, she’s intelligent, and she can rock a pair of combat boots. Find someone you’re comfortable with, don’t settle for who you’re initially referred to.

  2. Shock and depression is natural:

    When I was first diagnosed I swear I could feel death creeping in through the cracks around my door. The truth is, when told you have MS (or any other disease) suddenly your mortality feels real. Not just in the “we all know we’re going to die someday” way, but in a way that forces you to acknowledge that your finish line may be sooner than you expected. What’s important is remembering that your life is not over, and if you need help – reach out.

  3. A lot of times it’s hard to tell if you’re having a symptom flare up, or if you’re just working yourself too hard. And if you have a new symptom, promptly tell your doctor.

    For me, the most difficult symptom to decipher was fatigue. There’s a big difference between MS fatigue and just being sleepy. Since I was still in college at the time I just assumed I was tired from staying up late for school. But no matter how much sleep I got I was still constantly tired, which led to me becoming irritable and unpleasant to be around. Eventually, I told my MS doctor what was going on and she said that it was probably a new symptom so I should get an MRI to see if there are any changes. Which leads me to ….

  4. If a drug is not working, change it:

    Initially I was on Copaxone, which is a daily injection. Giving myself a shot everyday was torture, made even worse when I tried to use the autoinject pen thing that was supposed to make the process easier. I would cry for an hour trying to will myself to push that damn button. And my MRI showed that it wasn’t working, in the year that I was on it, I had 4 new legions appear in my brain.

    So I switched to Tysabri, which is much better for me mentally as it is a monthly infusion, and a nurse is there to hook me up to the IV. Since being on this drug I’ve had no new legions, and one of them actually got smaller.

    Find the drug that works for you not just physically, but mentally as well.

  5. Be active:

    My MS doctor loves that I’m active. That I dance. That I go to the gym. Remaining active is a huge factor in slowing MS down.

    After the shell shocked part of being diagnosed, I had a whole new level of drive to dive head first into the dance scene. Maybe it was because everyone was telling me how they knew people who couldn’t walk anymore, or maybe it was because I had a new appreciation for my life. Either way, I wanted to dance my heart out for as long as I physically could.

    Find an activity that you enjoy, whether that be dance, sports, hiking, or jazzercise. Just be sure to pay attention to your body, I’ve found that when symptoms start to flare up it’s usually because I’m pushing my body to hard. So I have to make sure that I’m being healthy, and giving my body rest when it needs it.

  6. You can live your life just as full as everyone else.
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Of Tuesday Tunes – Mainstream Kid by Brandi Carlile

My song of the week is Mainstream Kid by Brandi Carlile.

Brandi Carlile has been one of my favorite artists for years, and I just learned yesterday that she released a new album, The Firewatcher’s Daughter, in March. So naturally I immediately bought the album, and proceeded to listen to it on repeat while at work.

It’s amazing! Arguably her best work to date. The album is the perfect balance of uptempo folk and poetic indie.

I choose Mainstream Kid for my song because it just makes me happy. The energy is great. The guitar solo is fantastic. And Brandi’s vocals are on point. It’s the kind of jam that can brighten your mood, or put you at risk for accidentally speeding on the freeway.

Favorite Lyric: “I came to saturate the market, to perpetuate the hip kid.”

PS:
Because I’m such a fangirl I felt the need to share that my favorite lyric for the entire album is from a track called The Eye:

“You can dance in  hurricane, but only if you’re standing in the eye.” – Isn’t that just beautiful?

Of It Follows (Movie Review)

When I first saw the trailer for It Follows I thought, “STDs! The horror film!”

It looked like every other horror film out there, pretty girl, vicious monster, and some sort of torment. But then when the film came out it was getting praised by film critics and bloggers. And even the trolls of the Internet were all like, “YES! This is the best horror film in a decade. Huzzah!” Currently on Rotten Tomatoes the critics have given the film a score of 96%. For a horror film, that’s insane. It Follows has a higher score than most Oscar nominated films. It has a higher score than The Avengers, Forrest Gump, The Dark Knight,  A Single Man, Despicable Me, and Guardians of the Galaxy. #ridiculous

So naturally my curiosity peaked, what about this indie horror flick has everyone talking? But when I left the theater, I was baffled, baffled as to why the Internet is in love with this thing.

On a scale from 1-5 I’d give this film a 2. I would’ve given it a 3 but it literally has the worst film score of all time. The music is repetitive and I swear it was made on a cheap 66-key keyboard like the one Ross played on F.R.I.E.N.D.S.

The dialogue was also terrible with weird pauses in the conversations, but it was really the music that killed me. It all sounded like this:

  • Boom
  • Silence
  • Boom
  • Synthesizers
  • Boom
  • Boom
  • Louder Synthesizers
  • Boom
  • Boom
  • Annoying loud Synthesizers and Strings
  • Silence

There will be spoilers up ahead, so if your heart was set on watching this movie you may want to look away now.

The overall idea of the film was good, a shape shifting demon-like thing is going to be constantly walking straight at you until you pass it on by having sex with someone else. But, if whoever you pass it onto gets killed by said mysterious thing it’ll start in your direction again. Cool, I can accept that as a plausible horror film story line, I can even accept that as a marginally original idea for a horror film, but I can’t accept that anyone would ever get caught by this thing – it moves crazy slow.

Seriously, it’s so slow that when it was in the kitchen with the main girl, she was able to stand there panicking for a good minute as it inched towards her before she finally decided to run. And where does she run? Upstairs! Idiot.

Realistically this thing shouldn’t even be around anymore, considering that there had to have been a 1st person that it followed at some point in time. Within the first 3 people, 5 tops, it should’ve gone down the line and killed them all. Unless everyone happened to be promiscuous and it couldn’t keep up with the sexcapades. But even then, how did the first person know about it? Were they cursed by someone and promptly informed?

I will give the film makers credit in that they accomplished their goal of slow anticipation. But once the initial shock wore off the anticipation became annoying. Over half the movie is of them driving away from the thing and then hanging out until it catches up to them. Personally, if I knew that a mysterious thing was following me. If I knew it was trying to kill me. And if I knew that it was always walking the speed of a snail. Then I would drive further than 30 minutes away. Shoot, I would drive to the airport, hop on a plane, and spend some time in Europe. It’s gonna take a long time for it to get across the Pacific Ocean.

I would also try to discover the origins of the thing to see if I could end the curse. Even if I wasn’t successful, at least I tried. These kids didn’t do anything, they just kept running away and then came up with the worst plan of all time.

But here’s the quick list of what’s wrong with the film:

  • The main girl has no respect for her cast whatsoever and goes swimming with it. Yes, I get that she’s being followed … but still.
  • Am I supposed to believe that if a girl with a broken arm swam up to three dudes hanging out on a boat that one of them would sleep with her? What about the other two? Are they watching? Did they jump in the water?
  • They know they can’t kill it with a gun, but they still keep trying to shoot it.
  • They take all this time to set up an elaborate scheme to electrocute it to death, and they don’t even turn on the power because they think it left the pool. But it couldn’t have gone anywhere since it’s clearly corporeal due to the fact that they can touch it. And it’s supposed to be walking everywhere, which implies that it can’t teleport itself out of there. Furthermore, electrocuting it obviously wouldn’t work considering a bullet to the head didn’t take it down.
  • The first guy that she sleeps with after she gets the curse clearly didn’t believe her that it was a STD-like thing, so he was just using her to get laid.
  • Why is it almost always naked?
  • It brutally mutated the girl in the opening shot and it went straight for the throat of the guy she slept with. So naturally when it approaches the main girl from behind it just lifts up her hair instead of snapping her neck.
  • Why was it peeing itself in the kitchen? That was gross.
  • What time period is this?! They use home phones and dress 70s, but one of the characters has this shell touch screen electronic reader thing that she’s constantly staring at.

 

Of Tuesday Tunes – Hedwig’s Theme by John Williams

My song of the week is Hedwig’s Theme by John Williams.

I just spent three days at the Magical World of Harry Potter in Universal Studios Orlando. And needless to say (but I’m gonna say it anyways) it was amazing!

Songs of witches and wizards still dance in my head and I don’t think they’re going away any time soon.

Everywhere we went in either Diagon Alley or Hogsmede, the classic film score was playing – it was absolutely delightful. I highly encourage any fan to venture down to Florida and experience first hand the magic that is Harry Potter.

Favorite lyric: Not applicable as there are no words.

Of Tuesday Tunes – One Last Night by Vaults

My song of the week is One Last Night by Vaults.

This is one of those deceptively sad songs. It’s a power ballad with a pop beat, but it’s about losing someone and yearning to spend just one more night with them – even if it’s all a fantasy. See? Sad. Either that or the apocalypse is happening and they literally won’t see tomorrow.

One Last Night is beautiful, my favorite thing about the song is the violins that are woven in with the chorus. They bring the sorrow and longing that’s in the lyrics to the orchestration of the song. And it’s lovely.

Favorite lyric: “Ghosts and silhouettes, they take a piece of me they want it all. Oh but to wait in an empty room, with the feeling that is closing in.”

Of Tunesday Tunes – Life Has Been Good To Me by French Stewart

My song of the week is a cover of Life Has Been Good To Me by French Stewart.

This weeks song is a little bit different in that is from an episode of 3rd Rock From the Sun, the show that I am currently binge watching. The 2-part episode where the Solomon’s all dream for the first time is absolutely gorgeous. The creators took full advantage of the ridiculous premise of aliens on Earth combined with the surrealism of dreaming, and it worked. But the real highlight of the episode was the song and dance number performed by French Stewart.

It’s a jazzy little blues number that is just fun. In fact, I’m pretty sure I’ve danced to the original version by Randy Newman (performed by Bonnie Raitt) at various Blues Dance Venues, but there’s just something extra special about French Stewart singing the ditty.

Life Has Been Good To Me is incredibly catchy and the choreography from the show is spectacular. If you wanted to watch more than just the clip below it’s from season 3 episode 26 of 3rd Rock From the Sun.

Favorite Lyric: “Life Has Been Good To Me.”

Of Tuesday Tunes – Make You Feel by Alina Baraz & Galimantias

My song of the week (on a Wednesday, sorry) is Make You Feel by Alina Baraz & Galimantias

Make You Feel is an incredibly sensual song. It’s captivating in that effortless, “I just woke up like this,” kind of way. I know there’s a lot of beautiful down-tempo electronic songs with female vocals out there, but the song is different from the norm in it’s simplicity. The artists didn’t build up, rather they built down. The magic of this song is in the chorus where they manipulate the vocals to be part of the instrumentation.

I love this song. I want to dance to it. I want to have sex to it. Something about this song makes me feel powerful and sexy.

Favorite lyric: “Breathe me in, taste my words, let me blow your mind. I’ll take you far, far away, I’ll make you feel alright.”

Of Tuesday Tunes – The Butts Remix by Home Free

YASSSS!!!!!!!

My song of the week is The Butts Remix by Home Free.

Home Free is a wonderful, and adorable, country a capella group that’s not afraid to be a little bit silly.

I went to their concert a few weeks ago and just before the intermission Tim, the bass vocalist, said something along the lines of, “Earlier we sang All About That Bass, but just in case you don’t believe that Home Free celebrates curves – here’s a whole medley about butts.” Naturally the crowd went wild!

And it was so delightful, I was laughing the entire time. So when I got home I tried to find decent videos on YouTube, but it was impossible. Camera phone speakers cannot due the a capella group justice.

So when I saw that they made a music video of the medley I was downright giddy and watched it immediately.

It was everything I wanted it to be 🙂

Favorite Lyric: When Rob raps to Sir Mix-a-Lot, it’s magical.

Of Tuesday Tunes – Got It by Marian Hilll

My song of the week is Got It by Marian Hill.

I can’t get enough of Marian Hill this week. Until last Friday the only song of hers that I was familiar with was One Time. So while doing DJ research I decided to buy the album and my only regret is that I didn’t buy it sooner. The whole album is amazing! It’s sexy, but not in a predictable way, and she plays with electronica in a way that I’ve never really heard before.

Got It is an example of how she combines the sexy and playful in a perfect cocktail. It was difficult to choose one song off the album, but decided to go with Got It because it really stood out to me the first time I played the album through.

Favorite lyric: “You think it’s love, but you think too much.”

Of Tuesday Tunes – Carry Out feat. Justin Timberlake by Timbaland

My song of the week (on a Wednesday, sorry) is Carry Out feat. Justin Timberlake by Timbaland.

This song came out in 2009, but I came across it again while sifting through my mountain of music and thought, “Oh yeah! Must dance to this.”

Carry Out has a classic 2000’s hip hop beat, sexy with whistles and lots of synthesizers. And while comparing a woman to a fast food joint isn’t the most flattering of metaphors, the punny-ness of the song is fantastic. It’s the kind of song that I would DJ as a throwback to get people all nostalgic and excited.

Favorite lyric: “Number one, I take two number three’s. That’s a whole lotta you, and a side of me”