Living with SMA means my body is like a jigsaw puzzle

As hopeful as I was when starting naturopathy, I didn’t actually expect anything to come of it. Desperate for relief and having tried everything else, I decided it was worth a shot. At the least, I could return to my doctor with the hopeless certainty of someone who has explored every other avenue.

The first few months were frustrating. I spent oodles of money on supplements that didn’t seem to do anything. But my naturopath seemed to believe that she could address the underlying cause of my skin issues. Her confidence was a welcome change, especially compared with my dermatologist, who said my perioral dermatitis (PD) was virtually untreatable.

So I stuck with it. I wasn’t holding my breath, but I had to admit it was nice having a medical professional on my side. So many doctors are quick to prescribe antibiotics, and I don’t blame them — in that kind of environment, with that kind of pressure, you want to see as many patients as possible as efficiently as possible. But that kind of one-size-fits-all approach doesn’t work well for people like me, with coexisting health conditions that muddy the waters.

My naturopath didn’t want to fix me as quickly as possible. She wanted to build a solid foundation. She wanted to decrease the likelihood of my developing new problems. And she was willing to look at my health in its entirety, including my SMA.

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The more I learn about my body, the more I see it as a jigsaw puzzle. There are so many moving parts. So many aspects of SMA we don’t yet understand. How are we supposed to predict the impact of rare disease on things like cardiovascular and reproductive health when so few patients make it to adulthood? What does thriving look like when, in many ways, we’re the first in our community to move beyond survival? How do we navigate things like wellness and quality of life, when not so long ago, those things weren’t even on our radar?

A few months into my naturopathy journey, I tested my hormone levels. It turns out I have naturally low progesterone, which could easily account for my skin issues, from PD to my decadelong battle with cystic acne. My naturopath suggested I try an herbal tincture that would promote normal female glandular system function.

It didn’t take long for my PD to clear up. It was a miracle in its own right. Years of struggling with this near-inexplicable condition, and all it took was 40 drops of an all-natural, herbal tincture? It was bonkers.

But it was real. My lip was clear, as was my face. I was free of acne.

Bonkers.

Of course, my body is a jigsaw puzzle, with countless moving parts. I solved one problem only to discover another.

I was now dealing with perpetually feeling bloated.

I’m still in the process of identifying the underlying cause of my new symptoms. But for the first time in many, many years, I feel hopeful about my health. I’m still living with SMA. I’m still in a wheelchair. But not everything is out of my control.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.