12.17.2015

How To Cope When MS Steals One More Thing You Love

Lest you think this is a silly post about shoes, be advised, I am dead fucking serious.

I inherited my grandmother's legs. My G was cool enough that we just called her G. She was self-aware enough to know her gams were her best feature. At 80, she was vain enough to insist on wearing a leg-revealing skirt and coat to an outdoor ceremony in the dead of a Montreal winter. I miss my G and her impractical dedication to fashion. 

It was in this reckless spirit that I decided to throw caution to the wind and wear high heels to a Christmas party. What’s the big deal, right? Let me remind you that my last post was about how I spent a week in a wheelchair. No wonder people don’t understand multiple sclerosis. I wish I could tell you my rise to heels was thanks in part to some impressive improvements in my balance, foot drop and leg strength. I don’t know what I was thinking. 


Yes I do. 

I was thinking, this hem line requires a heel. That's math. And like my G before me I understood that sensible has no place in fashion. 


I know. I'm the worst. The heels thing sounds like so much bullshit. It’s shoes; an accessory. Don’t you have bigger problems?


Don't you have MS?

Of course. Maybe that’s the cost of finding joy in small things. Sometimes small things can railroad you. But this doesn't feel like a small thing. For me, heels represent femininity. Not for girls, this is the footwear of women. Practical and impractical, strong and sexy, they are a rite of passage; luxuries that are said to provide a sense of escapism in dire times. 


Are these not DIRE TIMES? 

Not to mention the power of the pump to say what mere words cannot. A stiletto can make an impressive entrance, but what about when you need to pivot on a dime, and storm out of the room with an angry staccato click-clack to reinforce an obviously justifiable rage?


Lumbering out in loafers is just so unsatisfying.

Before last Saturday, I can’t remember the last time I wore beautiful shoes. If I’d known they were going to collect so much dust in my closet I surely would have made more of an event of their last-ish appearance; drank champagne from them, or gone to sleep cradling them in my arms. My descent into flat, boring safety-shoes has been slow and insidious. I reluctantly started using a cane, while gradually sinking into a lower and lower heel. I told myself these modifications were temporary; that they were to get me through a long day. It was a desperate lie that I clung to; a way to stave off the inevitable grief.  

Of course the sum of my presence is greater than that which supports me, but it is not untrue that what we wear impacts how we carry ourselves, and at least in my experience this starts with what’s on my feet (the state of my hair coming in a close second). The addition of a bulky orthotic strapped to my leg and crammed into my boot has necessitated sizing up, so not only am I required to wear low, sexless shoes, my slender Grecian toes have been transformed into clumsy Shrek feet. And I just have to accept this gracefully? What?

Over the past several months I've been contemplating shoeicide giving away my shoe collection. If my legs get stronger my old shoes will be out of style and in need of replacement anyway, right? But the truth is I‘m afraid to get rid of them, because maybe they won't come back. The high heel has become a measure of something more than vanity. It's about ability, and that's the real devastation. I've lost a few battles to MS already, and I'm pathetically unwilling to wave a flag of defeat on this one.

So on this night, I tentatively donned a pair of Fluevogs. Not outrageously high, but legit heels. I extended my cane so the length would support me on the left and had The Banker on my right. I walked slowly and with concentration, feeling tall and gratified. I didn’t have many steps to take. I didn’t drink as many candy cane martinis as I might have in flats. I spent most of the night perched on a chair, legs crossed and ready to receive compliments, surrounded by some of my most lovely friends who said nothing of my irresponsible choice but only ‘Oh my God, I love your shoes'. 

My G would have been proud.




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12.04.2015

Sitters are Quitters and other lies

The Banker and I have just returned from a much needed beach vacay. I'm not on good terms with winter and if I’m gonna get through it, a healthy dose of Vitamin D (that D is for daiquiri) could be my saving grace. The morning we left saw a light dusting of snow and a scary patch of black ice en route to the airport. It was time to get the eff out of the 6ix.  

But, wait a second. Isn’t heat hard on MS?

Guys, everything is hard on MS. 

MS is like a buffet of four thousand individual diseases. MS related heat intolerance is called Uhthoff’s Syndrome. Sidebar: People who discover diseases and then name them after themselves. Is that the most messed up thing ever? I would have called this something like Magic Mind-fuck Syndrome (MMFS) or Let’s Also Ruin Sunshine’itis (LARS). Here’s the dumbed down version of how I understand it. Where there's existing damage/myelin loss, nerve conduction craps out when body temperature is elevated. Messages that may get through at normal temperatures can’t travel as efficiently when they’re all hot and bothered. As little as 0.5 degrees of increased body heat can impact nerve conduction and make you feel like you are relapsing. That means weather, showers, exercise and even having a fever can all wreak havoc. It’s not just 'Ugh, I’m hot, I feel tired'. It's more like 'Ugh, I’m hot, I CAN'T FEEL MY DAMN LEGS.' Scary shit. That said, allowing yourself to get fired up is not considered reckless. The assault only lasts as long as the heat source and exposure causes no permanent damage. Fun Fact: Before fancy MRI machines became de rigeur doctors actually diagnosed MS with the ‘hot bath’ test. 

So, why would I want to put myself through this? 

Because I still love the beach and the ocean, margaritas and mariachi bands. It’s not ideal but I’m not willing to give up the guac. And the alternative was to stay home and think about how cold I am. Plus, I felt like The Banker deserved to see my bare legs one last time before I retreat into semi-hibernation. 

Knowing that just being in the heat of Huatulco meant I could count on my already weakened legs being even weaker, combined with the reality that lately I've been struggling to get half a block with a cane, we came up with a two part plan.
  1. Low Expectations
  2. Wheelchair Everywhere
Of course we still expected to have a fab time. Low expectations meant only that we wouldn’t plan excursions or anything more ambitious than dinner. And if that felt too hard? Room Service por favor. The purpose of our trip was to be somewhere together and to relax. We would pursue those goals and those goals only. No swimming with dolphins or visiting Mexican coffee plantations. 

Wheels everywhere meant just that. We negotiated this before we left so I could wrap my head around it but also to avoid having to assess its need on a daily or even hourly basis. I didn’t ever want to ask for the chair nor did I want to be asked ‘Is today a wheelchair day?’ I knew it would be easier on me if it were just part of the routine without constantly checking in to see how I was coping in a beautiful but somewhat hostile environment.

This would be the most concentrated period I’d ever used a wheelchair. I had a list of concerns. 
  1. A wheelchair would make me less pretty (eff you, Kylie)
  2. It’s a mega drag for someone (The Banker) to have to push me around
  3. People will stare
  4. Sitters are Quitters
Just a little light existential pondering while staring into the Pacific. 

But then everything looks sexier under a palm tree.

Wheelchairs make you less pretty
My vanity doesn’t take vacations. If anything I ramp it up a notch on holiday. You’ll never convince me I’m as much of a babe being wheeled into a restaurant as I was waltzing in on stilettos. I can feel sad about that so please don’t give me any inner beauty bullshit. I will however meet you halfway and agree that what’s even less sexy is tumbling over in said heels and landing on the cheese trolley. 

I realize how trivial this might seem and I don't care. MS means having to renegotiate my self-image from time to time. I also recognize that there are some pretty hot bitches on wheels out there. I'm encouraged by you and thank you for not hiding your sparkle. (I'm talking to you, Darce).

It’s a mega drag for someone else
If it sucks to push someone around then I told myself the only thing worse would be pushing someone around who’s freaking out about being pushed around. I don’t like being dependant (Can you take me to the bathroom, please?) even if The Banker is the most considerate and accommodating man in town. On the other hand, get over yourself, woman. Because the real truth is, what’s even more of a drag is slow walking in the heat with someone who needs your arm for support and to stop every few minutes for a rest. It’s more of a drag to finally reach your destination but have your day cut short because there's no energy left. It’s taken me forever to realize this. 

People will stare
Okay, so this one is true. To be honest, I didn't really notice (probably because I'm LB, guys). But The Banker noticed and he took the opportunity to stare down every single slack jawed gawker who dared to raise an eyebrow over the pink bikini in the wheelchair. Personally I thought I was pretty boring. Most people were more interested in the bartender at the swim up bar. Or the overly tanned burn victim. Or the old guy in the white speedo. I could hardly believe that after a week in a chair not one person asked me what was wrong with me.

Sitters are Quitters
I might struggle with this one the most. I have translated the bullshit idea of 'Use it or Lose it' into intense pressure to remain upright at all costs. I have drunk deep from this toxic Kool-Aid, and made really poor choices under the misguided belief that the more steps I take the more steps I will be able to take. The frustrating reality is that this simply isn't true. I don't have nearly as much control or influence on this disease as I would like. I believe in exercise and physio but persevering in this Sisyphusian manner is self-defeating and demoralizing. It's what lands me in tears on the sidewalk one block from home calling for a ride because I can't walk any further. There is no need for me to ever let myself get to that point. 

I'm smart enough to know that rather than being an actual limitation, the wheelchair, like my good friend Cathy is actually an enabler, a tool to be used to grant me access to life rather than an extension of my physical body. I get this. I just need to keep reminding myself. Most vacationers travel to escape their troubles but in a lot of ways I have to confront mine. It helps a lot to see the sun. I point my face in that direction as much as possible. And when it’s too cloudy, tequila.



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11.21.2015

What? But, you look so good!

Pfft. Just so we're clear. This doesn't mean you actually look good. I mean, you're probably not bleeding and there's a good chance you're standing up.  Maybe you're wearing lipstick. You don't look bad but that doesn't necessarily mean you look good either. It means I can't tell what's wrong with you just by looking. It means WHERE'S YOUR DAMN WHEELCHAIR?

duh, wtf were you expecting?

If you have relapsing-remitting MS (RRMS) chances are you've heard some version of this. It’s not even unique to multiple sclerosis. It’s a refrain familiar in all chronic disease communities where invisible illness is common. "But you don't look sick!" is what comes immediately after outing yourself with some dreadful but mysterious condition. 

Is there something about a disease like MS that renders its victims exceptionally attractive? Don’t get me wrong. I love hearing about my good looks and great hair, but rather than feeling like a true compliment, this one smacks of disbelief; of incredulity there could possibly be anything wrong. I was once asked ‘Are they sure you have MS? You don’t look sick.’ I was tempted to say ‘You don’t look ignorant’, but of course, she totally did. (She was wearing Crocs.) The whole thing feels like a sneaky accusation of phony fakery. Of laziness. Of 'It’s all in your head, you whiny whiner'. Let’s face it. ‘But, you look so good!’ is ig. Over and again it compels us to provide proof we are actually suffering. 

I hate this sentence.

I could list all the invisible ways in which MS affects me. And I've totally blurted out way more than I’m comfortable with, to nosy rando's no less. But there’s nothing I can say that’s gonna make the world sit up and get it. And why should it? There are a bazillion catastrophes at any given moment, and nobody can understand or relate to all of them. It would be exhausting and emotionally unbearable. The best response I can hope for is the benefit of the doubt. You don’t know, maybe you wanna learn, maybe not, and that's cool too. 

Because why is it so important people know we feel like garbage, anyway? What drives us to try to prove we have a disease? Why do we get our backs up when half the time we’re trying to pass for normals anyway? It's frustrating when others can't see or understand the limitations of MS. There are practical implications, and the last thing anyone struggling through anything needs is to get the side-eye of doubt from some jerk. When that side-eye is coming from friends, family or coworkers it's even worse. That raised eyebrow is adding insult to injury and it hurts.

And then there are our own unhealthy judgements. When I see that suspicious look, my own doubt is reflected. I can’t see my symptoms any more than you can, and most of the time I think if I just try harder I'll be able to walk this block, clean this tub, make this supper, drive this car (just kidding guys, I’m LB, duh). We're hardest on ourselves. While we suspect you think we’re not trying hard enough, we wonder if it's true. We repeatedly ignore the messages our bodies send and try to rally. The physical struggle might be about the strength of our bodies on any given day but the mental one is often a battle to simply will ourselves to do that which, based on how we look, we think we should be able. What we need to tell ourselves is the same thing we need others to understand. 

MS is real. MS is hard. 

If some poor befuddled person is driven to reconcile what they see with what is purported to be reality and thus wants to learn about MS it is fortunately really easy. (Hint: Google). There should be no pressure to explain the finer points of what this life is like. You don’t owe anyone an explanation of something so personal. 

We're all curious, judgemental bitches from time to time. Let's show compassion, and before we glibly assess anyone else’s anything, pause a moment and ask how we could find out more. We have no idea what battles others are fighting just as they can’t see ours.

It would go a long way to hear 'this must be difficult'. A simple nod to what we're dealing with. MS is complicated. If you'd like to know more about what it's like, please get drunk and tie your legs together. Or, you know, Google.

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11.08.2015

Happy Birthday to the Banker

I am coming off a week of infusions and feeling way too yucky to party but it's The Banker's birthday and saltines and ginger ale are a poor substitute for cake and champagne so we will have to postpone a proper fête. In the mean time, here is a little toast to my bae.

This is a song I wrote and recorded with my Brooklyn Bestie. It is for and about The Banker and his incredibly hopeful, enduring and sustaining love for me. Through all the murkiness of life with MS he sees sunny skies and endless possibilities. When I am my grossest, he somehow maintains the best version of me. And when the noise in my head gets too loud I always know I can turn it off and give it over to him. He just seems so certain, to know absolutely where the light is.

Have a listen.



We climbed another hill today
and looking back I can't believe how far we came
Looking up I see the sky
And knowing that you'll catch me I feel I could fly

Through your eyes I'll always see 
an endless road stretched out beneath my feet
and through your eyes I'll always be
the best of all the guesses kept inside of me
I see the future and all my fears subside
I see it through your eyes

We watch the daylight fade away
and one by one the stars all try to take it's place
moonbeam shadows dance and fold
but in your arms I barely feel the cold

I'm right where I dreamed I'd be
I'm right where I wanna
you're right where I dreamed you'd be
Wherever you are is where I wanna be


Happy Birthday to The Banker


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10.30.2015

Thanks again

Last week I wrote about how MS has made me resilient and how I am grateful for that. Since then I've heard from a couple of people who had their own examples of surprising blessings. They were different from my experience but it totally resonated. So.

I need your help.

I want to write part two of this story but I need to hear from you. Has this ridiculous experience facilitated anything that you are grateful for? Please send me a private message and I will share our stories, anonymously of course.

Thanks for reading,

A.

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10.20.2015

MS Sucks. Can I Be Thankful For It?

Seriously? How can I be thankful for something that takes so much?


I'm grateful for MS. I know. I just threw up in my mouth. Tastes like blasphemy.

I'm grateful for MS, but this isn't a post about silver linings or looking on the bright side. I will not ask you to drink from your half-full glass of rose-coloured rosé before you put your head back in the sand. Let me be very clear:

MS fucking sucks. 

There is nothing inherently good about this loathsome disease, and I wholeheartedly believe in saying it sucks, when it sucks. 

Sucks. Sucks. Sucks. 

And I will keep saying just how much it sucks as I suffer through every miserable moment of rage, and angst, and grief, on the highway to Sucktown. I will mourn every loss, and every lost potential. I will scream and I will cry. I will let it out. And I don't want anyone telling me to feel better.


Ever. 

What I do want from my posse is for them to listen, to pour me a glass of wine, to put their arms around me, and to whisper that they love me. I want them to hand me the tissues while telling me they don’t know how it’s possible, but I’m even prettier when I'm crying. 

When the dust settles as it always does, I will take a deep breath and say I’m grateful for every single shitty thing that has ever happened to me. Of course it’s way easier to do this long after a crisis has passed. Time affords healing, clarity, and perspective. And ultimately, the ability to recognize what I've gained throughout it all, and that is resilience. 

Resilience is one of the most valuable skills we can cultivate and there is simply no other way to get it than through first hand, tough as shit, life experience. MS is the steep price I’ve paid for that which has turned me into rubber. 

Tough, bouncy, resilient, rubber. 

Most of the blessings we name at Thanksgiving are transient and temporary. Eventually we may lose some of the material things we appreciate. We most certainly will lose loved ones we hold dear, and eventually all of us will confront our own struggles with health and mortality. How not to get swallowed up in the overwhelming suckitude of it all?  

Giving thanks for the fragile and fleeting can ground us in the present. It's important to count these blessings. But this Thanksgiving, I'm feeling particularly grateful for something less tangible, but perhaps more enduring. Something I might even have a little control over.


Dear MS,
Thanks for the AWESOME life skills.
What I really wanted was a Chan Luu scarf, but, I get it; in this economy.

Blah, blah, blah, hardship builds character, right? I’m not convinced I would actually choose a strong character over strong legs, but since I'm stuck with ‘life experience’, when the next MS meltdown strikes, I can remind myself that my ability to adapt has been earned and learned and lives deep within me. Even if my body breaks, I won’t be broken. 


I'm still here. 

I know how to do this. I'm sure my resilience has a threshold. We're talking rubber, not steel. But I'm surprised and grateful to learn I haven't reached it yet. 

In the immortal words of the great Chumbawamba, 

I get up again.









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10.08.2015

How to Pack the Perfect Hospital Bag

Whether you're heading to an infusion centre for your monthly dose of Tysabri, getting a course of Lemtrada, or treating a relapse at Spa-umedrol, packing a great bag can make the hours and days of  tedious and uncomfortable therapies a lot more bearable. Since there is no fashion mag dedicated to MS (Ms. magazine is sadly, not about de-mylenating in style), I offer you my best attempt at 'What's In Her Bag? Hospital Edition'. Because fashion is fun. It might be shallow and materialistic but sometimes stuff makes you feel better. Here's what I'm packing for my upcoming five day medical séjour.  

Patent leather bonus: sleazy hospital germs can easily be removed with a disinfectant wipe.


What's in there?

  • Travel Water Bottle Hydration is key when being pumped full of chemicals.
  • Tech I don't have to tell you to pack your iPhone but don't forget your charger. My iPad is loaded with The Mindy Project and Gilmour Girls. (House of Cards is forbidden, because that's a watch-together show, and I can't betray The Banker like that.)
  • Pill carrier Getting IV therapy doesn't mean you get to skip your regular meds. Pack OTC's like pain relievers and anti-nauseants to handle unpleasant side effects.
  • Lip gloss Hospitals can be so dry. Chapped lips are gross.
  • Hand Sanitizer Hand sanny is key. Immune systems are suppressed. Hospitals, guys. Ick.
  • Enormous Sunnies In case you want to sleep or be ignored. Or paparazzi.
  • Blanket Scarf Tissue sized hospital blankets are never enough. Though I do love that they come from ovens. 
  • Fingerless Gloves Cold arms mean rogue veins. Guys, I'm always cold.
  • Litt Trashy gossip mags were made for days like these. 
  • Journal For recording any drug-induced moments of genius.
  • Snacks that won't make me barf Vomit suppressing snacks include ginger chews, ginger cookies, ginger ale, my ginger bestie. Basically anything from the ginger family.
I'll also be bringing my mom (because The Banker's gotta bank), who will no doubt have her own giant tote in tow. She always carries Emergency Chocolate. She was a nurse, so. 

What's in your hospital bag?

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9.23.2015

Guinea Pigging

Four months after my most recent attempt to outsmart MS, a specialist told me that was it. I’d exhausted all multiple sclerosis treatment options and my best hope was to find some cutting edge study or wait patiently for science to catch up. And P.S. the treatment I’d just received precludes me from most studies. I’d sensed this was coming. Over the years I have given myself more than one Extreme Makeover - Immune System Edition and while it is impossible to say how much or how little impact all this tampering has had, it is fair to say that nothing has managed to put the brakes on. Stupid MS is smarter than me. And so, as I have done many times before, I began to adjust to a new normal, this time trying to make peace with the reality of my bullshit Frankensteinian gait.

Then just six weeks later and much to my surprise, my conservative neurologist recommended an off-label, experimental treatment with a side order of the MS carrot. That dangling bit of salad on a string to which every relapsing remitter is beholden. The vegetablication of the possibility that despite all odds, with some aggressive intervention and a decent amount of risk, things could maybe suck a little less. 

In addition to my regular injections and infusions of disease modifying drugs, my relapses have been treated with trips to the ER for countless rounds of IV solumedrol. The first time I experienced some steroid induced recovery it felt like a freaking miracle. I was blind and then I saw. I was lame and then I danced. I’m talking LITERALLY, people. Like a magic trick of biblical proportions. So what if it meant a little osteoporosis? Steroids were the carrot and I was the hungry pony.  Over the years I would make this deal with the pie-faced devil again and again.

Here’s the thing. 

Carrots are okay. For a vegetable.


Their medicinal value is questionable at best. The ways in which we plead and bow to them is frankly, embarrassing. Someone should tell the horses not to lift another damn hoof until those dried up carrots have been marinated in maple syrup, dipped in cake batter, deep fried and coated in cream cheese icing. Because that carrot is a shifty lie-teller. With each relapse the promise of remission is dangled a little further away as I creep closer to a more progressive MS. The carrot gets blurrier and just a bit more out of reach. But it’s too late. Once the carrot has been tasted it cannot be resisted. The possibility that whatever is happening to my brain and spinal cord could be undone is just too tempting. Never mind that this is an incurable illness and that the only guarantee steroids are handing out is insomnia, achey joints and six pounds of water weight. The carrot wants you to ignore the risks and bank on the reward.

Relapsing remitting MS is a turbulent trip between periods of utter devastation and unbelievable gratitude for even the tiniest bit of improvement. Over the past year or two my ability to recover has become highly dubious. My luck is running out. Even my status as relapsing is debatable. The carrot has broken its promise. 


But now, temptingly, there is a new vegetable on the menu. An experimental treatment, rife with its own unpleasant side effects and whose efficacy is a long shot at best. Nevertheless I will put my life on hold for a little while and submit to this guinea pig status, embracing the headaches, nausea and barfing. I totally needed to lose six pounds before Thanksgiving anyway. Because it might help. How? Pfft. Nobody knows. That’s not important. It is the best (and only) offer on the table right now. And a month ago I thought my bargaining days were over. 

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9.13.2015

Blood Donut Day

I love tradition. I am devoted to ritual. From big holiday and birthday celebrations to ushering in the seasons with tree-tapping, open-toed shoes or apple picking, I embrace it all. Mini weekly rites like Martini Mondays, Sunday Family Snuggle Time and Saturday morning coffees on the balcony are all part of the solemn sacraments that help guide us through life and cultivate the identities of our relationships. They bind us together. They mark our days. They make us pay attention. There is no occasion too big or too small for which a glass of pink champagne cannot be justified. Of course, not every day can be a bar mitzvah but hear me out because I am about to give you a whole new reason to eat sugar.

Each month for the next five years or so, I am required to subject my teeny tiny veins to a blood draw. Every. Single. Month. This is because I had some pretty serious MS treatments with some potentially long term side effects. How serious? I had to sign a contract promising that no matter where in the world I may be, I will do this. Every month. For five years. A bossy nurse calls every 28 days to issue me a stern reminder. It is the only solid five year plan I have ever had. 

Now, I don't mind the pain of the needle. In fact my eyes roll fairly far back in my head when people freak out over a basic blood test. Once you have to deal with real shit you tend to toughen up (I'm looking at you, F). What I don't like about these tests is the trek through the lab crammed with approximately 482 sickly people, most of whom seem bent on exposing my still depleted immune system to their strep throats, whooping coughs, and tuberculosis. I am convinced there is always at least one person in that hot, crowded room being tested for plague. Bubonic or Pneumonic, it doesn't really matter. I hold my breath, say a prayer and throw all of my clothes in bleach as soon as I get home. 

The other anxiety about this monthly obligation is the stabby suggestion that I have taken some risky chances for the possibility of improved health. I have made a hot deal with the devil and getting tested for the potential consequences reminds me that something along the way could go really wrong. I used to subscribe to the 'only one disease at a time' philosophy, but doctors assure me that's not a thing


At one of my recent trips to the clinic, was a brave little guy who needed quite a number of prickly tests himself. His mother came armed with presents and treats to get him through it. She promised him the biggest reward of all when it was over. She didn't tell him not to cry. She didn't need to reassure him he wouldn't contract bird flu simply by walking in the door. She held his hand while he squealed, told him he was brave and all of his suffering and distress seemed to vanish the instant he was presented with his final reward, a beautiful cupcake covered in a rainbow of sprinkles.

Could this kind of negotiation and trickery work for me?

While the answer to my entirely rational fear of contagion is of course to continue to coat myself in hand sanitizer, restrict my exposure to WebMD for the fortnight before my appointment and avoid making any eye contact once at the clinic, there still exists a need for comfort in the face of this enduring and unpleasant routine. Inspired by the little boy with measles or malaria or whatever it was he had, I decided to turn this experience into a decidedly more delicious one.

Enter donuts. 

'Is there anything they can't do?'
(Homer Simpson)
Conveniently located right next door to my blood clinic is a super fancy, hipster, upscale donut joint. Here's the new routine. The Banker drops me off at the clinic and while I am being poked he picks up a couple of lattes and some designer deep fried pastries. Carrot cake with cream cheese icing for me, and red velvet for him because we are in this togetherThe whole time I am in the clinic, I am thinking about my delicious reward. An indulgence made sweeter given my mostly whole, organic foods regular régime. I barely even notice that the person in the waiting room next to me for sure has a fever. Now I look forward to blood draw day or as it shall henceforth be know, Blood Donut Day. These are called coping strategies, people.

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9.02.2015

Scotland

Tomorrow The Banker and I will hop on a red-eye for a quick jaunt over to Scotland. That sounds so glamorous and cosmopolitan. Of course by 'hop' I mean throw back two glasses of wine at the airport bar before shuffling over to pre-board with grannies and frazzled parents. By 'red-eye' I mean subject myself to a serious case of time travel induced barfiness. I fully expect to be met at the gate in Glasgow by two or three Dementors who will suck what remains of my life force from my jet-lagged and weary body.

Castles, whiskey and food dares, oh my.
Many, if not most people travel to enjoy a reprieve from their daily struggles and stressors. But for those of us whose biggest worries are health related, travel is anything but an escape. Traveling exaggerates every single underlying symptom and physical challenge we face. It is hard. There is no vacation from MS. In fact, MS would be a lot less glaring if I were to just throw back my wine on my comfy couch and binge watch House of Cards. Negotiating cobblestones, strange food, weird bathrooms, lack of sleep and inaccessible transit sucks. There will be frustration. There will probably be some tears. There will most certainly be whiskey.

So, aside from the drinking, why am I so excited? 

Despite all of this, I freaking love travel. It is in my bones. And I especially love to travel with, and to, my favourite people around the planet. I will endure all of the associated unpleasantness because it is in seeing new places and experiencing the unfamiliar that we are awakened. We must keep moving, keep having new adventures and creating new memories with the people we love, who challenge us and help us to better understand ourselves. Every time we travel we are changed a little bit for having had the pleasure and the pain.

I live for this. Bring it, Dementors.

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8.25.2015

The no-good, ignorant, annoying advice, everyone with MS can expect.

Today I received some advice, unsolicited of course, from someone who is neither doctor nor patient, but who claims to know some 'medical professionals'. It went a little like this: "I don't know if you've ever thought about your diet before but, eating potatoes is really, bad for MS."

Over the years, these people who, I presume, mean well, have felt it necessary to educate me on everything from costly and invasive surgeries and therapies in foreign countries, to extreme diets, to impassioned claims I should make sure it really is MS because the internet, or some headline, says drinking diet soda can produce symptoms identical to MS. I've heard all about the best friend who cured herself with an animal protein diet as often as I've heard about the vegetarian in complete remission. 


So, what's wrong with me? Why am I still sick?

The advice one receives with a chronic illness like MS is not limited to pushy diet and intervention tips either. I'm constantly being told, by people with uncomplicated bodies, to 'keep fighting' and, to 'not give up'; because a positive attitude will for sure keep me out of a wheelchair. (You lazy, giver-uppers in wheelchairs, apparently have no one to blame but yourselves)


Silent Killers


If only it were that simple.

These overly concerned experts often barely know me and, I suspect, if questioned, would be hard-pressed to provide an even accurate-ish description of multiple sclerosis. The people who mean well are convinced they have the answer.  

Here's a little of what they don't know.

Diet soda is disgusting.

Whatever the magic potion these people are pushing, chances are I already know about it. I've been on all the drugs, supplements and diets. I've sought out the experts and hopped on more than one plane to more than one country for tests and treatments. I know all about stem cells, bee stings, cobra venom and hyperbaric chambers, hookworms and hypnosis. I KNOW ABOUT HSCT. I'm an educated, informed, proactive patient. 


I know more about my disease than you do. 

Random stranger, I know you're not actually a patronizing idiot. I know you just wanna help. But here's the thing. You don't have to fix me. I really do know you mean well. It's just that, rest assured if it were that obvious to not be this fucked up, I would already be doing it. Times ten. 

The people who mean well are not the worst people on earth, just the most annoying. In a world where everyone knows a guy or a guy who knows a guy whose gluten-free sister cured herself with a trip to Lourdes, it can feel frustrating to confront such an oversimplification of a serious problem. My serious problem. But how about I make you a deal? I will feign interest in the story of how your coworker has MS but is totally fine and when you tell me about the worst thing you've ever had to face in your whole life I will tell you how to quickly and easily solve it with positive thinking, a litre of cabbage water and whatever the opposite of aspartame is.






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