Month: September 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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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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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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