How to support others in crisis

Loved one: Its been tough feeling this horrible, dealing with doctors, missing work, but it’s nothing compared to what you’ve been through or go through everyday.

Me: They aren’t the same thing. My normal is different than yours is. It doesn’t and shouldn’t minimize what you’re going through. I’m still here for you, even if just to listen.

Loved one: No, I know…I just don’t know how you deal with feeling like this all the time. 

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There’s a funny thing that happens when you’re diagnosed with an incurable, possibly life threatening, beast of a disease – no matter what ailments affect other people they will inevitably compare their struggles to ours, and more often than not, feel like they don’t have a right to complain to us. I know the above conversation or some version of it always comes from a good place. I know my loved ones would never minimize how difficult my everyday is. 

But we’re not talking about me. We’re talking about you.

I get it, being dealt a bad hand with you or your loved ones health is head spinning. Suddenly there are doctors with different opinions, a foreign language with long terminology, appointments, check ups and tests. There is pain, the emotional sometimes feeling more raw than the physical challenges. It will change your current lifestyle and for some even require permanent changes. Nothing makes you feel more vulnerable than failing health. 

Having dealt with medical practitioners for years has certainly given myself and even my husband a level of expertise we wish we didn’t possess. We’re not regularly vocal about my health but we also don’t hide that I have neuromyelitis optica (NMO). Friends, family, even co-workers and clients will seek us out for advice when they encounter the medical ‘system’. They know we’ve put in our time and are continuous learners and they need to ramp up their knowledge now.

I try to avoid using language like, “well I did this” and never use language like, “it’s not as tough as this”. I will always ask how their body feels but also what they are thinking about, no matter how irrational it might sound. I am grateful to hear them out because many did and still do for me. I let them know I am always hear to listen because their loved ones will also need time to process a new reality.

I am relatable for all the wrong reasons. Perhaps their health challenge is only temporary like a surgery with a recovery period or it is unfortunately a forever deal. Regardless, their today isn’t great and I want to support them like others have for me. 

Photo credit: Evan Kirby

Enduring NMO back pain

We all know back pain but for neuromyelitis optica (NMO) patients most of us know it that much more. Ever since my transverse myelitis (TM) attack in 2009 I’ve known serious back pain to be part of my every day existence.

I recently threw out my back with an awkward twist. There was a small pop noise and a shot of pain and then it subsided to something manageable, or at least I thought. Over 2 weeks I took it easy and figured with a little rest it would recover back to my normal. But it didn’t happen and after a few more weeks where it really affected my every day tasks like cooking in the kitchen, sitting at my desk or even walking, I had to ask for help.

I’m currently undergoing physiotherapy treatments for a serious case of sciatica nerve pain and a rotated hip but what else I learned about my body shocked me.

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In this first x-ray image we found not one but two fused sections of vertebraes in my neck, a genetic defect that unfortunately nothing can be done. But it certainly helps explain my forward head and poor posture, which trickles down to lower back pain to compensate the weight of the head.

In the second image it’s very clear I suffer from scoliosis. There are two types: acquired (from poor habits that can be improved) and genetic (that nothing can be done and that’s evident if the scoliosis is found in the lower spine as well). As it turns out I’m just lazy so I’m needing to re-train myself on how to sit properly and I’ll be taught how to undue my acquired scoliosis. 

In the third image we see my hip rotated (it’s smaller than the other, which is how we can see it isn’t sitting correctly), but we also discovered poor spacing between my vertebraes. The gaps between vertebraes should increase the further we go down the back but mine does the opposite. The disc that cushion impacts have also diminished. No one knows why my spine looks like this but at 35 years of age it could be anything from major impact falls, pre-arthritis, poor bone density or in my case repetitive high dose steroids that have deteriorated the quality of my spine. Oh, and it could have something to do with those awkward lesions left over from the TM attack.

As part of the treatment I’m seeing a chiropractor, physiotherapist, athlete specialists, massage therapy, and eventually kinesiology all working with the same clinic, Rosedale Wellness. I’ve been blessed with this incredible team of professionals who are taking a holistic approach to my recover but more importantly my long term sustainable spine health. It hasn’t been easy though. The treatments leave me dazed because my body isn’t familiar with the new posture setting. The sciatica hip pain is relieved temporarily but as I return to life it slowly returns. And the time commitment to good health is something I’ve had to decide I will stick with until the team feels I have enough tools and recovery; As a mom and entrepreneur I’ve had to off shift my responsibilities and that’s resulted in late nights as my new norm. 

For NMO patients who think back pain is something that just comes with the package I recommend speaking to qualified specialists because it might not be the case for you, just like it is starting to be for me.

City Exploring: Los Angeles and San Francisco

I find peace in my life by being present in every moment and working towards a better mindful meditation practice. That’s how I thoroughly enjoyed my summer vacation.

This year my family and I travelled to Los Angeles with a stop over in San Francisco before returning home to Toronto. Not one to want to waste a moment (and to constantly entertain a 4 year old) I jam packed our schedule in an attempt to see as much as possible.

We started with 2 nights in Anaheim at Disneyland. A smaller property than Disney World in Florida, there a lot of the same rides. My body fatigue has really affected me lately but with good planning (so you’re not running from one side of the park to the other), and a nap midday, it’s possible to see the best parts including the night time parade and fireworks.

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We headed into Los Angeles and visited their farmers market, The Grove, and the pedestrian shopping district. I thought it might also be fun to rent a powerboat and cruise the coastline. After an hour of choppy water (yup, we were sea sick) we opted to stay inland and enjoy some marina cruising. We visited the beaches including Venice Beach with their famous Muscle Beach attraction. I admittedly felt unsafe there because as a tourist trap every street performer, vendor and homeless person wanted our money, and asked in an aggressive manner. And we took in the natural phenomenon of the La Brea Tar Pits, which is as it sounds; natural tar that has risen to the surface and trapped fossils dating back hundreds of years.

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We finished our trip in LA at the Santa Monica Pier. On a bright, sunny day we peacefully strolled through the park, just enjoying each other’s company and being grateful for moments like those. I will say that the pier is not a smooth walk. With our small travel stroller, Sophie complained the ride was bumpy and the wheels occasionally got stuck in a ridge or groove. I might not recommend the entire pier to those in a wheelchair. You can still enjoy the view from the adjacent park.

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I booked San Francisco thinking I’d love to explore the city but hadn’t done my homework to know it’s quite an expensive city. Accommodations, even modest ones, can run several hundred per night. Don’t think about renting a car and parking; Even with Uber from one destination to another it is much cheaper. San Francisco has their famous Fisherman’s Wharf. A real fan of seafood and meats (protein is your friend when on a Paleo diet) I ate the largest crab in my life, cooked before me on the pier. We also spent a day visiting the Alcatraz Prison Island. I hate audio tours but this was fantastic. Wheelchair accessible with elevators on the island and the ferries, it is a sight for all to enjoy. There is a bit of walking but take breaks because you can leave on any ferry when you’re ready. Be warned about the city in general though – it’s much colder then you’d imagine and the streets are so steep cars ride their brakes often.

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I’ve always thought of myself as a beach bum or an adventure seeker but never as a city explorer until this trip. If you decide the west coast is somewhere you might want to visit, both cities and their people have so much to offer.

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Medicinal Marijuana for NMO

Throughout my NMO journey I’ve tried to keep an open mind towards alternative medicines. I’ve had great success with naturopathic care, acupuncture and osteopathy so when many of my trusted friends suggested cannabis, or medicinal marijuana, I thought it worthwhile to look into it. Cannabis has a bad reputation; Many people think marijuana is for a bunch of hippies getting high and eating Cheetos. Others think getting a marijuana prescription is just for those making up mild conditions who want to get high. Whilst both might be true in our world there are some fantastic testimonials from real patients.

I’m not the type to role a joint and get high but throughout my research I discovered CBD oil, or Cannabidiol, which can be consumed with a few drops on food, in drinks or straight under the tongue.  You can even diffuse CBD oil but others in the room will also feel the effects. There are many strains that have low or no THC levels, which is the component that gives the feeling of being high. I was transparent with my family doctor that medicinal marijuana was something I was considering. He was honest that he didn’t have extensive experience nor could he prescribe it but he did refer me to a reputable clinic that did.

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I’m fortunate that a close friend happens to be a key sales rep for one of the major distributors of medicinal marijuana products in North America. He spent a lot of time understanding my symptoms and suggesting the best CBD oil products. Here are my take-aways of CBD oil:

  • It still stinks. If you dislike the skunky smell of marijuana you still won’t like the oil.
  • Marijuana strains are very different and have names like Indica, Sativa or Hybrid. ie. Some help with insomnia, pain management, fatigue and/or several different combinations.
  • Each production changes so although manufacturers try to keep the potency levels as close to the last run it’s never exact. Remember, marijuana is a plant.
  • Because of production changes, prescriptions suggest amounts but the patient will need to dose up or down for each new bottle.

I tried CBD oil for several days and I’ve made the decision it isn’t for me. I dosed up and then more (and then more) and could never get the same relieve prescription medication provides me. I struggled with the taste (it was not that noticeable but did have an aftertaste) and after a certain amount I did feel somewhat paranoid. The one positive about CBD oil was that it helped with my insomnia but my other needs were not met. I felt frustrated trying to convert the prescribed grams into millilitres and then into how many drops that translated into.

I think there’s a place for medicinal marijuana but we’re still in the infancy stage. Doctors don’t have enough historical data to understand how the drug might best help different diseases. I can certainly see how marijuana might one day be part of the treatment plan for NMO patients and I know many who already do. The marijuana drug industry is regulated (and legal in many countries and states) but it’s tough for governments to monitor it. Uneducated patients may purchase from small retailers instead of one of the larger manufacturers direct and might purchase marijuana that is unsafe (ie. With pesticides or cross contamination). If you do decide that medicinal marijuana is something you want to try spend the time researching and choose a reputable clinic, doctors and distributors.

Good mental health is critical to managing your physical health

I imagine I’m probably one of the worst patients to treat. I fully understand the advice I receive but I’m horrible at following them. We’ve all been told it; Stress can really affect how we handle existing and future problems arising from having neuromyelitis optica (NMO) and admittedly, I’m in the habit of taking on quite a lot.

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I love to work hard and I work to live well. The type who suffers from wanderlust, adventure and trying new things, I generally only operate at hyper speed. A couple of months ago I knew I was at yet another crossroad. Where previously I could manage daytime fatigue, the burning sensation and general pain, my body had started to feel sluggish, unresponsive and exhausted. I tried to sleep it off, eat well and rest but I couldn’t bounce back. I recently blogged about a flare as a result but still couldn’t feel better.  (more…)

So Many Pills

I know it’s a gripe that I share with most NMO patients – having to swallow a lot of pills several times a day. I organize my medication in a daily pill organizer. Because it has become part of my daily rituals, I find myself often second guessing if I even took them today. Being able to check my pill organizer answers that question.

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What it’s like to get IVSM treatment

I do not cry wolf. In fact, I’m the type who will try to fight the wolf alone then only when it has half eaten my arm will I contemplate if perhaps I should have asked for help. That is how I am with this disease. Stubborn, relentless and unapologetic about it. It’s not the best strategy but it works for me.

2 weeks ago I had to finally admit defeat when I found myself in the ER and was prescribed 3 days of IVSM (intravenous solumedrol). Truthfully I’d been struggling for weeks before, noticing fatigue, weakness and then excruciating back pain. I first visited my family doctor, desperately hoping it was all in my head, but the moment he saw me he calmly said, “I think this time we can’t ride this out.” It was upsetting because I’ve been holding stable for several years now. In a lot of ways, I’ve been carrying on like the disease doesn’t exist in my life. I felt defeated, overwhelmed and angry. When I finally made my way to the ER it was dirtier and sicker than I remembered. I was uncomfortable with the fuss everyone made. My first dose was administered in the ER and then I was sent home, where a home care nurse would visit and administer the 2nd and 3rd doses. I managed that 1st dose alright. It instantly made me feel sick but it also started to relieve the back pain. And then this is where I really struggled.

I had to take a forced break from work. In my head I was trying to tough it out and carry on but my body just gave up. I barely remember the days that followed, living in my bed with my supportive husband raising our daughter alone and bringing me meals. I refused to tell friends and family my condition. Some found out and each time I felt like I let them down.

My daughter is almost 4 now. She’s intuitive and knew “Mommy is really sick”. She spilled the dirt to everyone she ran into, obviously really concerned. The home nurse had to put in the IV. I didn’t want her to worry so I let her watch and made it very matter of fact. I hate needles and hate IVs more but as a parent my first concern is how she feels. The moment tested my strength because I didn’t want her to see how tough this really was. Afterwards we wore matching mesh armbands, mine to cover the IV plug, hers as a fashion statement.

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I’m not at 100% yet but I’m doing my best to pretend I am. Last week I returned to the hospital for a 2.5 hour MRI. This disease has so many ugly moments and for me this was one of those. I tell myself that unfortunately not every day can be a good day but instead I’m focusing on those things I’m so grateful for – my family, the medical care, and that it’s been a decent run between flares.

Snowboarding in Whistler

We’ve just returned from what has now become our annual ski trip to Whistler, British Columbia and it was, wait for it…awesome! After years of on again off again learning I finally feel confident enough to call myself a snowboarder. Making such a bold statement is a big deal because for once I’m actually proud of myself.

I’m a snowboarder with NMO.

Neuromyelitis optica has robbed me of so much but it hasn’t taken away my spirit for adventure. Finally comfortable enough to complete blue runs in Whistler, I rarely fell on the mountains. Swooshing down at a max speed of 42 km/hr (there’s an app for that) I completed several hours each day, for 5 straight days in a row.

In your face NMO!

I will confess though; this was the most I’ve pushed myself physically since my major attacks. And yes, it hurt, a lot. On every run my back screamed in pain and my legs tingled till they went numb. I knew it was time to take a break when my body wouldn’t complete anymore turns. It usually resulted in a fall from exhaustion/pain. So why do it? Because the sense of accomplishment and adrenaline is my new drug. It easily outweighs any amount of pain or fear of heights. The ongoing pep talk in my head is an exercise in will power. It is how I have always planned to live with NMO.

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Me boarding one of the back bowls on what was quite a foggy day. The run is called “Burnt Stew Trail”.

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Me, stuck in powder snow. I am laughing hysterically because it was like falling into a cloud.

 

Now, I’ll never be an Olympic snowboarder, but my kid might be.

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Sophie, 3 years old. Having completed a week of ski school.

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Family photo, Whistler, British Columbia, 2016.

Vermont in December

As we approach Christmas Day I am bombarded with the usual holiday insanity of planning, parties, gift wrapping, and festivities. So right before the busy holiday season I booked a road trip for us to the beautiful state of Vermont. There’s nothing more I live for than the quality time I spend with my family together and I wanted to make sure the 3 of us got that in before our attention wandered. We stayed at Smuggler’s Notch Resort, a ski property hailed as the #1 family resort on the east coast and unfortunately (or fortunately depending if you’re not a fan of the cold weather) there wasn’t any snow except for on the top runs of one of the mountains and on the beginner hill.

After 7 years of trying to learn how to snowboard, last year things just clicked so I was really looking forward to seeing how well I’d do this season. This was also the year I decided I’d let Sophie try skiing.

Sophie is 3.5 years old now. I started her in dance when she had just turned 2. At the time I knew she loved music and after a year of weekly classes, Sophie surprised everyone with her confidence on stage. But watching your child go barrelling down a ski hill, even the bunny hill, is something I wasn’t sure I would ever be ready for. Maybe it’s because I’m actually not the greatest on the mountain, my fear of heights or that no parent wants to see their child get hurt but I secretly hoped she’d refuse to strap on the gear and quit. Then we’d try again next year.

But apparently I’m raising one tough kid.

After a few runs with her coach Sophie figured out the magic carpet, balance and how to go down the beginner hill. In fact, she announced that she wanted to do it herself and from that moment no one could help her. By noon on her first day she was focused, confident and having a ton of fun. And she taught me an important lesson.

Sometimes I think I’m up against a challenge or an uncomfortable situation, like having to stand by helplessly and watch my child figure out a dangerous sport. But in reality, it wasn’t tough at all. In fact, had I not left Sophie to her very capable coach I might have projected my fears onto her. That day Sophie taught me that things aren’t always as they seem. Tough situations might actually be challenges where we learn something about ourselves, and our kids.

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6 years (or 2190 days, 312 weeks or 72 months if you’re counting)

Today it will be 6 years (or 2190 days, 312 weeks or 72 months if you’re counting) since Neuromyelitis Optica (NMO) tried to take over my life.

I hate this anniversary.

Every year as the anniversary arrives I try to stay positive and envision myself as some sort of super human. I have a lot to be grateful for (or brag about) – I’m a mom to the most energetic 3 year old, I co-own and run a successful company, I’m a wife to a talented journalist, I have best friends and I still do try crazy shit like run a 10km, snowboard and drink my weight in Chardonnay. Most nights I can’t turn my brain off so I lie in bed, completely exhausted, my body always on fire, my limbs feeling like they’re filled with lead, finally acknowledging that every fibre of my being hurts and I mentally high five myself. Ya. I destroyed today. This fucking disease has nothing on me. And then it’s morning and that egotistical voice in my head sounds panicked. What if today’s the day your feet can’t feel the ground again? What if today’s the last day you ever get to see?

This anniversary always feels like one big morning panic attack.

No matter how much I accomplish the rest of the year, I always feel so defeated on anniversary day. You see, NMO can sneak up on any day, even on one of my ‘better’ days. That is what it is to live with an incurable disease.

I wish I was a big enough person to be gracious today; to be proud that I’m surviving NMO one more year or to simply ignore the day. But you see folks, I am merely just a regular human with a learned ability to know how to fake it. Today makes me angry, makes me sad, makes me resentful. Today I’m more like Gollum, where my version wants to binge eat cheesies, eat several Twix candy bars and spend quality time with Netflix. Don’t look at me!

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If you’re feeling this is dark, don’t worry. Like during my mornings, the internal self pity and doubt does eventually end. Something always jars me back to reality – an alarm clock, a preschooler, sometimes even my own motivation. On anniversary day I do the same and wait for the inevitable life challenge to win over my self deprecation. NMO hasn’t taken over my life; It is my life and that’s a truth I’m always denying. Between the doctor appointments, the daily drugs and the consistent pain, there’s also all the good in my life. But if it’s all the same to you, today I’m gonna take my day and cover my knuckles in cheesie dust.