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 Beauty From Illness

Dakota Fanning

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When difficult times arise, the core essence of who we are comes out. With my family, it all came down to love. It glimmered around us like our own private rainbow. For as the tulips began to bloom in the spring, my grandma started to fade. Her body attacked by bacteria on her pacemaker and seeped into her blood.

I would describe Grandma’s love as fierce, a powerful force driven by her love for Jesus and the genuine desire to ensure that her family is taken care of. She has this ability to know if I need something, whether it’s a few bucks for gas or a toothbrush, she’s always looked out for me. A practical love.

I went to visit her during my lunch break. I was expecting her to be like sick people in movies, suffering but still coherent, with a good chance that they’ll be okay in a week or so.  When I walked in the hospital room, she was being spoon fed by Grandpa, her fever so high that even being fed like a child was difficult. Her forehead was sticky as I kissed her. I’d never seen her vulnerable, and to me, that was the hardest part. I tried to hold myself together, tears threatening to pour from my eyes. I got up to wash my hands, checked my watch, tried as I could to not completely breakdown in the room. For my struggling was not what mattered, we were there for Grandma, but we needed to be supportive for Grandpa.

In the way that Grandma is fierce, Grandpa is sweet. From the glimmer in his smile, to the way he hugs you like he’s never seen anyone so wonderful, Grandpa is without question one of the cutest people to ever grace this planet. He’s gentle, caring, and truly kind.  He’s so humble that I don’t think he’s ever realized the effect that he has on the people in a room, for I’ve never met anyone else like him.

Watching Grandpa look over Grandma, he’s sweet nature shining in his eyes, was possibly more heart-wrenching than watching Grandma suffer in her bed. But I can honestly say, I don’t think I ever witnessed the power of love until I watched them in the hospital room. People always think they know what love is, usually defining it by putting someone else first, compatibility, and the willingness to work through difficult times. All of this is true, however, understanding that you may never see your partner again, and doing everything you can to ease their pain and tell them how wonderful they are – that’s love in the rawest form.

There was something beautiful about how my family functioned. Our personal lives were put aside with the understanding that Grandma and Grandpa came first. We gathered around Grandma every day, ate our lunches in the hospital cafeteria, did what we could to help – which was essentially just to be there. We were all hopeful that the operation to remove the bacteria ridden pacemaker would go smoothly, but we also understood that this could possibly be the end of Grandma’s time on this Earth.

When I got the word that Grandma made it through the surgery, I took the first real breath I’d had in days. I was crying and laughing, the walls of trying to maintain composure finally cracking. Though sadly, we weren’t through the worst of it, at least, not yet.

Grandma’s fever was still on the rise, making her uncomfortable and delirious. I went to visit her on a particularly bad evening; she tossed and turned, groaning in agony, trying to rip her temporary external pacemaker off her body as it sat uncomfortably on her chest. It took an hour or so for her fever to drop enough that she could open her eyes and see me. If there was ever a time that it would be totally acceptable for someone to be selfish, it would be then. But she looked at me, told me how precious I was, and informed me that she had leggings for me back at the house.

Grandma’s true character is selfless. She barely complained, whenever she was coherent she would make sure that we were all well fed, she’d talk about her beautiful family, and how she doesn’t know what she’d do without us.

Now it seems like Grandma is through the worst of it, however, she’s still gonna be in the hospital for at least a month as they wait for the bacteria to completely leave her system. But even through the hardest times, the one thing that really stood out was how much my family loves each other.

And I’m not just being biased, even the doctor’s made comments.

Up! Movie

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Of New Chapters

Belle - Beauty and the Beast

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That’s why I’m going. So I don’t have to wait until I die to start seeking a Great Perhaps.” – John Green, Looking for Alaska.

Routine is nice, but it’s a wee bit on the boring side. Lately it feels like I’ve been meandering aimlessly – when I could have been frolicking gleefully.

Everyday I bitch about waking up, I hate waking up, almost as much as I hate getting ready for bed. Though nothing is worse than getting ready for bed. I’d rather be forced to play team sports or do yoga – both activities I suck at, and have zero desire to participate in.

Then I do your basics: shower, make coffee, grab breakfast on the go, tailgate the assholes who refuse to drive the speed limit, scurry into the office, and get everything set up before my bosses arrive.

Next up, I work. I truly enjoy my job, I do, so I don’t mind working – but still, routine.

Lastly, I go home and hang out with the roommates. And then one, if not all, of these scenarios will play out:

  1. We spend at least an hour trying to figure out what to make for dinner.
  2. We talk about dance (or actually dance).
  3. We talk about failed attempts at romance.
  4. We watch a movie.

Repeat.

Repeat.

Repeat.

I’m starting to get thirsty for something new and exciting – a Great Perhaps, you could say.

I need to step outside my comfort zone. Meet strangers. Try new activities. To stop talking and actually do something. However, I require someone else to hold me accountable thanks to my minuscule self-motivation skills.

Cause you see, I’m great at talking about what I want to do, but I rarely actually do anything outside of my routine.

I’ve always wanted to:

  • Perform burlesque.
  • Write freelance articles for a sub-pop culture magazine or literary journal.
  • Write a novel.
  • Start a vlog.
  • Successfully ask out a stranger.
  • Learn to hula hoop dance.
  • Sew an outfit that doesn’t look homemade.
  • Get proper DJ equipment and mix my own tracks.

Alas, here I sit. Doing nothing.

I talk to the same lovely people everyday. Eat the same foods. Do the same activities. And succeed at hiding myself away in my cozy little corner, where everything is safe, and I never have to deal with anything uncomfortable or intimidating.