Jane Gould
Jane Gould
S is for Steroids

S is for Steroids

And an unsuccessful experience at a support group…

Dear friends,

Welcome to ABCs of MS! 

It’s extra hard putting this out there and talking about myself this week with everything that’s happening in Ukraine. I’d like to quote meditation teacher, Tara Brach: 

“To our beloved friends in Ukraine and Russia, and all who are suffering with the invasion of Ukraine: Please know that countless beings around the globe are holding what’s unfolding with horror and deep prayer.

May there be a pathway to peace; may the courageous people of Ukraine have the sovereignty, respect, and freedom that all beings everywhere deserve.  Our hearts are with you!”

Thank you for being here with us.

Jane & Emily

When my neurologist told me he wanted me to take steroids my mind lept to bodybuilders. What on earth was he thinking?

Bulging Body Builder

Steroids are a standard treatment for someone with relapse remitting MS having an episode. The quicker steroids are taken, the quicker they work to reduce inflammation and in turn scarring in the brain, neck or spinal cord. This results in less damage to the body. 

My first encounter with steroids didn’t go well. I was 28 and had lost the ability to use my right arm and hand. I went to hospital for three consecutive mornings for intravenous steroid treatment, and then had four weeks of oral steroids to taper off. Aside from being hooked up to a drip for four hours, a gnarly process that involved multiple stabbings to try and locate veins, the worst bit about taking them was sitting in death’s waiting room with an assortment of ailing people.  

My neurologist explained that the dose of steroids was the same amount that would be given to a motorcyclist who wasn’t wearing a helmet who’d been in a high-speed accident. They made me nuts. By the third day, I was buzzed and angry. I hallucinated and was unable to sleep. My face was an itchy swollen red moon. But, they did the trick. I regained about 80%-90% feeling and use of my arm and hand. They meant I was once again able to carry and care for my one-year-old.

Beetlejuice movie screenshot

Soon after my first encounter with steroids, I attended my first and last MS support group in San Francisco. It was a cold and wet winter night and the group was meeting in a hospital conference room. The halls were grey and bare, bathed in fluorescent yellow light. Opening the door to the room I came upon a group of middle-aged and senior people, puffy rain jackets squashed into wheelchairs, looking pissed off. As far as I could tell, they were there to moan and share how miserable they were. When I had the chance to talk, I asked how they handled the side effects of steroids. To my surprise, their frowns turned upside down and they excitedly swapped stories about how much they loved them. They giddily shared that steroids made them feel more normal, and wished they could always be on them. I had no idea what they were talking about. 

I had a course of steroids about every two years until I was diagnosed with secondary progressive MS in 2018. (That diagnosis means I don’t have episodes anymore so don’t need steroids.) Each time I took them I noticed the side effects decrease, and liked them more and more. This correlated with the progression of my disease. The last time I had them they made me feel so good I wanted to be on them forever. It’s official. I’ve become one of the old-timers.

Psst… hey! Thanks for making it all the way down here!! We wanted to let you know that ABC’s of MS is officially on Twitter. Follow along for all things Jane, MS, and newsletter-related.

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Jane Gould
Jane Gould
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