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.

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 – 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”

Of Tuesday Tunes – Fake I.D. feat. Gretchen Wilson by Big & Rich

My song of the week is Fake I.D. feat. Gretchen Wilson by Big & Rich.

Last year I took the time to learn the line dance from the Footloose remake, which happens to be choreographed for this song. Then last Saturday for a combined birthday party with my roommates lady friend and myself, we forced a bunch of our friends to learn the magical (and kinda complicated) line dance. Because of this event, the song has been playing in my head for a few days now. I would love to do this line dance with my friends again. Next time we do it they’ll even have had time to practice.

The song itself is country, very country, but it’s also super catchy and has a fun energy that makes cowboys and cowgirls want to boogie.

As for the music video … enjoy the hotness that is Julianne Hough.

Favorite lyric: “Hey mister! Hey mister!”

PS – if you want to learn the dance, click here.

Of Tuesday Tunes – Love Me Like You Do by Ellie Goulding

My song of the week is Love Me Like You Do by Ellie Goulding. Sorry it’s Wednesday, Tuesday somehow slipped right passed me this week.

Ellie Goulding is the master of the powerful kick, she knows how to build a song, when to pull back, and when to heighten the energy. Through the use of layered voices to create the feeling of a choir she’s able to create a festive atmosphere that is completely captivating.

I love this song. While the lyrics aren’t the most earth shattering and they’re intentionally repetitive, it’s a fun song that makes me want to move, dance, and be in love – which is fine by me.

Favorite Lyric: “I’ll let you set the pace, cause I’m not thinking straight, my head spinning around I can’t see clear no more. What are you waiting for?”

Of Tuesday Tunes – Superhuman Ft. Kelly Sweet by Juventa (Alternative Mix)

My song of the week is Superhuman Ft. Kelly Sweet by Juventa (Alternative Mix).

Considering that I was so lost in an imaginary dance to this song that I nearly ran a stop sign going 50 mph on a country road – I figured I should make it my song of the week.

Superhuman is gorgeous. It’s slow tempo, chillstep, downtempo, liquid dub – whatever you want to call the genre – at it’s finest. The song is heavy with captivating synthesizers and beautiful vocals.

I listened to this song about 5 times in a row after I almost ran the stop sign, I just couldn’t stop imagining a stunning yet heart breaking routine on repeat.

Favorite lyric: “Maybe I fall, maybe I fail, maybe my hearts not made of stone.”

Of Tuesday Tunes – Thinking About You by Big Scary

My song of the week is Thinking About You by Big Scary.

This song is stunning. When I listen or dance to it I feel serenely calm as my soul gets lost in the music. It’s the kind of song that puts me in a different place. If I’m driving I feel like I’m in a movie, suddenly everything seems more interesting and important. If I’m dancing the connection with my partner becomes intoxicating and the song transports us to the most beautiful part of danceland.

The magic of Thinking About You is in its vulnerability.

It’s romantic. It’s sad. It’s nostalgic. It’s honest.

It’s the kind of song that puts all the emotions on the buffet table and allows you to pick what you need.

Favorite lyric: “You were my heart shaped queen on your way to school. You were a paper back girl back before it was cool.”

Of Tuesday Tunes- Cruel Ft. Julie Thompson by PYRAMID (SKisM Remix)

My song of the week is Cruel featuring Julie Thompson by PYRAMID (SKisM Remix).

I’ve been rocking out to this song for the past week, especially when hoop dancing. The song is both dramatic and melodic, which allows for a lot of fun. It follows the typical dubstep remix formula, but it’s done incredibly well.

I’ve found that remix artists often fall into one of two categories:

  1. They have WAY too much going on, and unless your one of those slam dancers there’s not really much to grab onto. The song is pure chaos, which I’m sure is sometimes the goal – it’s just not my cup of tea.
  2. I can hear what they’re attempting whether it’s a club, liquid, or house remix. But there’s just something off. Usually this is because they aren’t timing the pauses, drops, and kicks quite right. So the song sounds sloppy.

I’m very picky about what makes a good remix, and this one made my admittedly short list.

Cruel has the perfect balance of the original track and SKisM’s vision that allows the listener or dancer to feel the waves of the song. To really get into it and express themselves. I love hoop dancing to this song and I’m certain I would love blues/fusion dancing to it as well.

Favorite Lyric: “I ain’t gonna move to your melody.”

Of Tuesday Tunes – Feisty by Jhameel

My song of the week is Feisty by Jhameel.

I’ve been selecting a lot of ballads for my Tuesday Tunes, which is largely cause pretty emotional and/or sexy melodies own my soul. That being said, this week I have not selected a slow jam.

Fiesty has been one of my favorite songs for awhile, but this week in particular I’ve been listening to it an awful lot.

Fiesty is an upbeat tune with a vibe that’s mixture of pop, rock, and hip hop. Plus the hook is super catchy, making it the kind of song you want to listen to on a long car ride, when getting ready for a night out, or when showing off your more flamboyant side on the dance floor.

Simply put: it’s a fun song.

Favorite lyrics: “Cause baby, oh my, well it’s unfair. Looking like that, make a gentleman stare. Oh my, oh my, oh my, oh my. Feisty!”

Of Tuesday Tunes – Two Weeks by FKA twigs

My song of the week is Two Weeks by FKA twigs.

This song is dirty, the lyrics are explicitly about desiring sex, and how she’s so good that he’ll forget all about his lover, presumably his girlfriend.

What makes this song interesting is the unconventional melody, meaning that sometimes there isn’t really much of one. During the verses, there’s a part where she sings only one note in quick, sharp staccatos that lead into a breathy high note. There’s no doubt that she was aiming to sound orgasmic – and she succeeded.

The orchestration is made of heavy synthesizers and a strong kick in the percussion, matching the sexiness of the lyrics and vocal styling.

The music video is … odd. I’m not really sure of what to make of it, though my favorite part is when she starts pouring gold dust on one of her subjects for no apparent reason.

Favorite lyric: “Flying like a stream of thunder, only way to do each other (High), Pull out the insides and give me two weeks, you won’t recognize her.”