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.

I Quit My Job

I quit my job. It feels great to say those words so I’m going to give you a moment to marinate on that.

When I first got sick with Neuromyelitis Optica (NMO) I spent 6 months recovering from a Transverse Myelitis attack and in the process was let go from my job. It was absolutely devastating to be in recovery and then lose one’s identity. Now that is has been several years later (with my career back on track, a marriage, a new house, and a baby) I can look back and be thankful that my path has led me to the words, “I quit my job”.

Although I can’t speak quite yet about what I’ll be doing next, I can say that it is of no surprise to anyone who knows me well that I have a few tricks up my sleeve. Before NMO I felt invincible – I was young, ambitious and fearless. NMO took me down a couple pegs but it hasn’t defeated me.

As I see it I’m more prepared now for a challenge then I was before. I’m a Mama Bear now so I truly understand what it means to fight for my cub. And I have the amazing support of my husband – he’s my coach in my corner telling me when to throw my left hook. And like NMO, which is a relentless disease, I’ll fight with a vengeance over and over again. NMO has made me a more real person.

I know I’m one of the lucky ones. Every morning I throw my feet over the bed and hold my breath until I’m sure I can feel them touch the ground. So, in a big picture kind of way, it wouldn’t be fair if I didn’t fight the good fight for each and every one of you in my NMO family.

“Out there in some garage is an entrepreneur who’s forging a bullet with your company’s name on it.” -Gary Hamel

Its been 3 years already

Last Saturday was my 3 year anniversary of my first major attack of Transverse Myelitis. As the anniversary approaches I go through a range of emotions including:

Sadness (wow, its been 3 years),
Anger (I can’t believe this is my life!),
Pride (look how far I’ve come),
Denial (see sadness and anger),
and even Guilt (I’m so sorry to my family).

I wasn’t sure how I’d feel when the day actually arrived. Would I sulk under the covers? Act overly happy to compensate? Pretend it wasn’t a big deal?

In the middle of the night (after putting Sophie down from one of her feedings) I privately acknowledged this day by starting to write this blog post. I could hear my husband snoring beside me, my dog snorting at the end of our bed and my baby cooing in her bassinet and I thought, I’ll be okay. Having Neuromyelitis Optica (NMO) isn’t a perfect life, in fact, it’s one I’d rather not have but it’s mine nonetheless. So on this anniversary I will take ownership of this life, including all the ugly parts. Sure, there is more hard work for me than the average person (with the baby weight and steroid combination I currently hate myself in the mirror daily), but there is also so much I’m extremely grateful for (check out www.happyrambles.com where you can document your daily thanks).

The rest of the day went by like any other average Saturday. We shopped at the local market, I took an afternoon nap, worked out and then an old friend and her new husband came by for dinner and wine. Giving myself permission to make this day a big deal if I wanted to made it quite the opposite – just another day. I’ll have to remember that for next year.

What do you do on your NMO anniversary?

Woofstock

YouTube Preview ImageA dog is a man’s best friend, which is definitely the case for my pug, Marmaduke.  He’s been by my side for every second of this horrible disease, Neuromyelitis Optica (NMO).  When I had my first major episode of Transverse Myelitis (TM), my husband planned an elaborate surprise where my cousin wheeled me outside the hospital in my wheelchair to see my dog – that was the encouragement I needed to get out.  As I struggled through spasms, drug induced nausea and pins and needles, he waited patiently.  He never judged me for my weight gain and has always loved me the same.  I still feel guilty that we struggle on long walks or playing at the park but we make up for it with cuddles and of course, shopping!  Woofstock is North America’s largest dog festival, which is where we load up on Marmaduke’s favourite snacks, including Bullwrinkles.