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 Flexibility

Yoga on the Beach

Click image to view source.

Stretching is arguably the worst activity in the world, I loathe it fiercely.

I’ll never be flexible. Even as an awkward nine-year-old ballerina I wasn’t able to touch my toes, and I still can’t. Well, I could, if I wanted to be in severe and uncomfortable pain – but only for a moment.

When I was younger someone told me that if I slept sitting up and leaned forward over crossed legs (criss cross applesauce style) that I would wake up flexible – I believed them. Several nights I tried this technique, but for some mysterious reason I could never fall asleep like that. So I gave up.

A few years later I tried to do an eighties work out video with Sister that focused on stretching techniques and promised flexibility. The video basically had us bob up and down from the waist in various positions. I remember thinking that this would work. But alas, it failed.

People always say, “You just need to stretch every day, then you’ll be flexible.” Yeah, I tried that and it’s a steaming pile of lies. I even took yoga for a quarter, I still wasn’t able to bend over at the waist and comfortably touch my toes. On a side note, I got a C in yoga, which is truly pathetic.

I wish I was flexible. It’d be lovely to be able to twist my body into a pretzel and not cry out in agony. I’m sure if I was diligent I could reach a point where I could almost touch my toes with my legs straight in front of me. But as I said, I truly hate stretching.

I’ve accepted my fate as the not-so-bendy Sarah.

Of Uncomfortable Chairs

Today’s post is slightly different than usual.

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MRI Scanner

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You’re sitting. Your body is forming a temporary indent on the square of foam attached to the hard wooden chair. As you look around you think, I’m too young to be here. Your face is now free of blemishes. Your bust is no longer like a child’s, it hangs and moves as you walk and dance, held firmly in place by lacy fabrics and under-wire. You own business skirts and wear heels to work. You trust a middle-aged woman with a dragon on her arm and a rhinestone above her lip, like Marylin Monroe’s mole, to tame your mess of thick dark hair. You are old enough to vote, join the army, and get a cocktail with your friends, but you’re too young to rent a car. I’m too young to be here.

You try to avoid eye contact with the old man across from you. He’s shriveled and hunched over, his skin hangs off his cheeks in waves pressed down by a tube that crosses his face and reaches into his nose allowing breath into his weak lungs. His wife sits beside him; the beauty of her youth still resonating and sparkling in her hazel eyes. She is holding a green tank in her left hand as she kept his hand in her right. With them you sit alone, not talking, in the white room decorated with odd wooden carvings of indistinguishable figures and paintings of flowers. The eerie silence allows for the echo of the clickty clack of hidden keyboards behind a wall that reached your belly button when you checked in. Only five minutes ago? The patter of the buttons fills your ears as you try to focus elsewhere. You text your friends, but no one answers. You would listen to you iPod, but you forgot your headphones. So you grab a dated copy of People magazine and sit in the uncomfortable chair reading about celebrities who wore the same gold dress, are going to rehab, get their own dry cleaning, and drink Coca-Cola. Supposedly that makes them like you. Because they eat fast food. Because they go to the beach in their perfect bodies whipped into shape via the power of fitness trainers. Because their flaws are zoomed in on, called fat because they are now a size six. Accused of aging poorly even though they are beautiful. Your eyes glaze over the hundreds of gorgeous young faces. Until you hear your name.

As you stand up you feel the wrinkled couple’s eyes follow you. The receptionist who called you was a woman wearing a suit that sat squarely on her shoulders, if she had a womanly frame it was hidden behind various shades of pink and polyester. Her skin was tight with Botox and her hair appeared to be lightened by chemically induced tiger-like streaks of blonde. She asks for your date of birth, where you work, and to see your insurance card. Then a nurse dressed in blue comes to have you follow her. She looks about your age. Color filled her cheeks and her dark brown eyes communicated a level of empathy not given by the receptionist. The nurse cheerily asks you how your day is going. You say it’s fine as you think what a stupid question. She leads you through big red double doors. Hands you baby blue one size fits all pants and a nightshirt and leads you into a changing room composed of curtains. Your slender body could barely fit comfortably in the stall; you wonder what they do for fat individuals who can’t squeeze into the tiny spaces. You struggle to tie the shirt around neck without choking yourself. Fumbling with the string behind your back until eventually its comfortable – enough. The nurse instructs you to place your belongings in a cubbyhole, locks the door, and gives you a key to hold on to.

Once more you’re being led towards red doors. These doors led to more white, more aged people dressed in outfits like your own. You follow quietly as you are led further and further down the hall. A man, probably in his early thirties, comes out and shakes your hand. He was dressed in light blue scrubs, his body towers over you, thin and gangly. He reminds you of a lamp-post. He smiles and asks you how your day is going, you say fine as you think it’s terrible. He opens a door that led into a big room filled with medical instruments, some you have never seen. The walls are gray instead of white and the air is cold, very cold. There is a big glass window where a fourth wall should be. Through it you see a computer and numerous screens. In the center of the room is a big white tube that is shiny and narrow.

It is almost time. The reason why you came here is finally happening. You wonder why you’re not more panicked.  Shouldn’t you be afraid, or at least concerned with what the results of this day could mean? Tomorrow you could be told that you may not live as long you hoped, perhaps you do fit in with the aged sick people around you, at least in terms of life span. Or maybe the suspicions of the doctor were wrong. You had to think the last thought. For the sake of sanity, you had to think everything was going to be okay. The man in blue is just double checking that everything is okay.

The man tells you to lie down on the tongue of the tube. The width of which was barely wider than your body.  The surface was hard and covered with a white cloth. He places headphones on your head that aren’t playing music and begins to place a white cage, similar to a football helmet, in front your face locking your vision forward, eliminating the option of looking from side to side. A stress ball attached to a thin wire is placed in your right hand with the instruction of squeezing it should you need him to stop. Suddenly soft rock is playing against your ears as the tongue is slowly pulled into the tube.

Slight paranoia fills your chest as you are engulfed into the tight white space. Through the headphones the man talks to you. He tells to lie completely still and relax, that this will take about twenty or so minutes. Then music is back; some guy bitching about his cheating girlfriend. Outside the headphones it sounds like an animal has declared war on a garbage disposal. Loud cranking noises, reee reee reee, thud thud, high pitched eeeeeekks, and a low boom boom boom take turns trying to overpower the music. Now a woman is singing words you can hardly understand under the loud machinery that you can’t escape. You breathe, trying to focus on the music. But the machinery was getting louder, all that could be heard was the groan and processing of the medical instrument that you were now a part of. Suddenly it is silent. You relish in the moment, thinking it is over; soon you’ll be put back into the world. Away from white tubes, blue scrubs, and red doors.

Then thud, thud, eeeeeekk, boom, reee, reee, and now a machine gun appear to be trying to attack through the shield of white. The background music is interrupted by the man’s voice asking if you’re doing okay. You say yes wondering where a microphone is that allows him to hear you. He informs you that there’s about ten or so more minutes to go. The faint music is back. As you lie still all you want in life is to move your body. Normally you fidget through the day, tapping your toes, running your hands through your hair, cracking your back. Movement. You miss movement. Lying still might as well be torture. You remember watching your mother punish your little brother, not through spanking or grounding, but through holding his arms still pressed against his tiny body. When you were a teenager you thought that was silliest punishment ever. He was never held for more than a minute. You haven’t been naughty. But you are being punished for a hell of a lot longer. You can feel you limbs cry out and ache with the desire to move even if only a flinch. Just the ability to know that they can wiggle, that the tube hasn’t taken away the ability to use muscles. To dance, to walk, to fidget. You cave, letting your big toe bend. Your anxiety lessens for a moment, and you once again force your muscles to remain still as a dead body.

Finally the tongue begins to move away from the tube. The man comes and takes off the white wires. You sit up and hand him the stress ball swinging your legs over the edge of the tongue, cracking your toes against the hard floor, stretching your muscles, reaching your arms out as far as they could as you turn your body in various contortions. It’s over. You’re led back to your cubbyhole. Back to the curtains. Back through red doors.

The wrinkled couple no longer waiting in the room of uncomfortable chairs.

Of Staring at Death

Pac Man Graveyard

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I sit with an IV in my arm looking at death. Behind my peppy friend, across the parking lot, and over the fence resides a graveyard. A huge graveyard that goes on for miles. The irony strikes me as funny, diseased people looking at their future (well, everyone’s inevitable future), but still it’s amusing.

Nurses joke, they say, “Oh we just think of it as a park,” they try so hard to pretend their view isn’t bizarre (for a hospital suite) that I applaud their efforts.

I reply, “Oh no, it’s a graveyard. Definitely not a park. There’s no getting around that. Just accept it and move on.”

Then I start giggling, which makes the nurses uncomfortable, apparently most people don’t find these tombstones amusing. I don’t see how they can’t, especially considering that rolling hills of dead people is what was chosen as their splendid view for the next three hours.

We find it funny, my father and I. A big ‘luxurious’ suite filled with snacks and entertainment with all the patient chairs pointing at death. Makes it easy to transport I suppose, you know, when someone kicks it. That’s a grim statement, I apologize. Still, I find it amusing, I can’t help myself. Overall the atmosphere of the infusion suite is pleasant, except for the one flighty nurse that I would never let poke me with a needle.

We play cards, laugh, tell stories, drink orange juice, and stare at death till it’s time to go home.

Of Sickness

Jim Gaffigan

I couldn’t find a fitting photo so I picked this amusing image instead (Click image to view source).

Being sick makes me feel powerless and weak. Like I’m only five-years-old. I’m now the victim preyed upon by a heartless virus. My glands swell. The fine hairs on my body stand up. Every touch uncomfortable. Every sniffle a reminder. I may try to power through the impending doom. Convinced I’ll be fine. I shiver. I shudder. I’m not fine.

I need my mom to bring me tea and popsicles, to sit on the couch and watch so many hours of television that the rectangular screen becomes a blur, to whimper at the sight of food, to groan when I see a loved one has texted me, to whine, to bitch, to sleep till I feel this intolerable suffering chassé into the next poor soul who happened to cross it’s path.

I need my strength back.