“Ooooh Mummy, is that for me?”
With my hands full of what looked like swag bags, I had come home from Yorkville’s functional medicine clinic ‘The Movement Boutique’ with 3 different specimen collection tests.
“No honey, it’s not for you,” I told my 6 year old.
“Well what are they?” Her little hands grabbed excitedly at the bags.
“It’s homework from a doctor, so please don’t touch anything inside them, ok?”
“Hmmm. Mummy, they shouldn’t be giving you homework.”
“Well, it’s not really homework. It’s for my poop. I have to collect my poop for 3 days.”
“HAAAAAAAA you said a bathroom word and we’re not in the bathroom! Family Fun Jar! Put money in the Family Fun Jar!!”
“Well Vee, I have to say it in this context – especially if you want me to answer your questions.”
“Ok….so you have to collect ALL your poo?”
“No honey, just little parts of it.”
“Oh no fair. I want to collect poo for my homework… I want to ask Mr. P about it. Maybe I can write a story about it or bring some in for Show and Tell. Oh, and I can put some in the doctor’s office that I want to make out of Kleenex boxes for my Social Studies.”
“Ok no one is going to be playing with my poo, or your own poo or anyone’s poo-”
“What about Harrison’s poo? That’s easy. We have lots of that just kicking around. I can just grab one of his diapers—”
“What is your fascination with poo?! Just please don’t touch any of these containers if you see them in the bathroom or in the fridge.”
“Ewwwwwww the fridge?! That’s gross, Mom.”
“Yes honey, yes it is. But it will get me some answers.”
“And then you’ll feel better and you can play with us again, right?”
The comic edge to the conversation bottomed out abruptly as her luminous eyes sought out mine.
Mark It Zero
That sudden flip from well-timed humour to welling tears has been my family’s norm for a long time. We’ve been trying to roll with the punches since way before my diagnosis with Mixed Connective Tissue Disease (or Sharp’s Syndrome) last year.
MCTD is a rare autoimmune disease where the immune system attacks the organs, joints and skin of the body; and usually presents symptoms of Lupus, Scleroderma and Polymyositis. Symptoms can come on suddenly and present shockingly limitations— I have had mornings where I wake up and can’t walk. My legs are just seized up beyond movement.
I also have Crohn’s Disesase. I take upwards of 12 pills a day (that’s an approximate $480/month in meds) and have spent an average of 1 night a month in the hospital for the last year.
Over the last 6 months my symptoms have rapidly progressed.
I know. I don’t look sick. And I don’t consider myself sick. As I said— this is my norm.
We’ve tried steroid courses (Entocort, Prednisone), aminosalicylate anti-inflammatories (Pentasa), and immunosuppressive drugs like Azathioprine (Imuran). We’ve been moving towards biologics (Humira) for some time, but some neurological symptoms I’ve been displaying mean that I have to wait for a brain MRI just to ensure that biologics are the right course. Because taking the wrong medicine for the wrong disease could lead to even more disaster.
A few weeks ago I was called in for what I thought was the MRI, but it turned out that it was only another MRI for my sacroiliac which is severely inflamed. At that point my heart sank. It had been 4 months since that requisition had been called in and I realized it would be at least another few months of waiting for the brain MRI that I really needed. Another few months of pain management, questions, and my life passing by.
It was the last straw.
I felt like no progress was being made (even with a team of 4 doctors) and that my current treatments were more like giant symptom-targeted bandaids that compounded my discomfort with their side effects. The looming financial drain (Humira treatment comes in at a whopping $36 000 and change per year); my inability to work consistently to earn the new income I needed; my newfound dependance on government funding and programs; the strain on my partner to take care of me and the kids; the depression and anxiety that stemmed directly from dealing with chronic limitations on my enjoyment of life as a mom and creative entrepreneur; everything seemed to suffocate me. The world of disability took over. For the first time in my life, I had a real and ugly flash of insurmountable odds. I wanted everything to stop. I wanted my life to be over.
The Whole Picture
“You need to meet Shalini. She’ll sort you out. Promise.” My friend Dyane had mentioned Dr. Shalini Bhat’s name a few month’s ago as I talked about my wish to break out of the full-time job that was my health administration, and actually work on my health.
It took me a while to reach out.
Dr. Bhat is the founder and owner of The Movement Boutique – a wellness centre that utilizes functional medicine (staff are fully qualified kinesiologists, chiropractors, and acupuncturists) as well as movement (Pilates) and nutrition to manage symptoms and change people’s lives.
“I am just so tired of looking for ‘what is wrong’ with me. I am so tired.” I was sitting in Dr. Bhat’s tidy office. It hadn’t been my intention to start bawling, but there they were, big sumptuous tears spilling over my cheeks in long awaited release.
She nodded, understanding. “My father is a surgeon…I grew up with symptomatic treatment…But there’s a downside to it.”
“My favourite explanation is this cartoon, actually.” She leaned in with her smartphone and showed me a comic that perfectly summarized my situation.
“Treating symptoms can be effective in the short term, but specialists tends to focus on their one area of expertise and not get the whole picture even when it can be right in front of them…Your symptoms as a whole are your body’s way of trying to tell you something…We need to listen to what that message is…”
According to Dr. Bhat the first step of decoding that message is to take a snapshot of what’s going on right now. Multi-day specimen collections (as opposed to the less intensive OHIP-covered tests) are sent to private labs to capture everything from hormones to minute traces of parasite.
From there the next step is to analyze the results.
“Usually, when you get lab results back there’s a reference range for each marker, and things have to be significantly above or below those range limits to be considered abnormal…But those parameters already indicate a range of health conditions including illnesses… so falling in ‘the normal’ range isn’t really enough of an answer when it comes to your health…we can be much more precise than that…we can see why you don’t feel well and we can change it…you will feel better and it won’t be a quick fix…”
After years of trying traditional approaches to managing my health, I knew this was the right option for me. I desperately wanted to manage my pain using these approaches, and not with a perpetual perscription for hydromorphone or medications that masked and sometimes complicated my symptoms. I needed to stop framing my life through accessibility permits, and Trillium and ODSP applications, and instead embrace a mindful and holistic approach to my health.
I wanted to start this program as soon as possible.
3 weeks later, as well as 2 sets of lab tests and many adventures trying to keep my poop away from my kids’ ice cream sandwiches in the freezer (no really), I am happy to say that most of my specimens are sent off to their respective laboratories.
I have also had a fantastic and supportive response from my GP and my rheumatologist, who have both been working with me for over 2 years now to get a handle on my disease. Dr. Bhat is now leading the team by painting the whole picture and I am so grateful.
Maybe the most fantastic part of all is that I am going to be telling the story of my journey with The Movement Boutique right here as it unfolds.
That’s right. I am their new Brand Ambassador, and I am so honoured and proud that I can share every step.
I feel better already.
This post is sponsored by:
In exchange for Dr. Bhat’s time I’ll be sharing my treatment experiences and can hopefully help others connect with the journey that will bring them their optimal health.