Silver Linings - a Column by Jennifer Powell

suffering

Jennifer is the Director of Community Engagement for BioNews (Multiple Sclerosis News Today is a subsidiary of BioNews). Jenn is also the  host of the Multiple Sclerosis podcast, as well as a featured columnist. An active advocate in the MS community, Jenn imparts her hopeful optimism into real-life challenges facing the MS community. Now with secondary-progressive MS, Jenn continues to elevate the patient voice to better the lives of those living with MS. When not writing, Jenn enjoys volunteering with golden retriever rescue, traveling, and spending time with family and friends. Jenn resides in Orange County, California, with her husband and golden retriever.

Learning to Navigate Cog Fog

The cog fog (cognitive fog) is thick and heavy. I cannot seem to extract words from the alphabet soup that fills my head. This is torturous for a self-described word nerd. And as my MS progresses, so does the fog. Slowed cognition has become one of the most…

Reclaiming Our Sexual Health

I am often so preoccupied with the daily maintenance of MS that I forget where the disease ends and I begin. It is too easy to lose our identity among the myriad challenges that accompany a chronic disease. I am the queen of juggling chaos, but that often leaves…

Restarting Rituxan: One Down, and a Lifetime to Go

Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin…

Sailing Beyond Fear With SPMS

I grew up sailing the San Francisco Bay. My summers were spent in sailing school. My father’s daughter, I loved being on the water. There was no place more peaceful or exhilarating. That serenity turned to turbulence one cold and foggy day. While speeding downwind, our boat broached. The…

A Dog’s Love in a World of MS

I am staring at my golden retriever, Abby, as she sleeps on the lawn, the afternoon sun dancing through her fur. Lying so still, she is encapsulated in a golden glow. I glance at her chest and am reassured by its rhythmic rise and fall. Abby is 10, and…

Accepting a New Diagnosis

I have long preached the merits of acceptance. In embracing my MS, I have mitigated much of the accompanying fear. This modus operandi has enabled me to live alongside my disease as opposed to clashing with it. While ideal, it is becoming increasingly difficult to follow my advice. Two…

Connecting Through MS on World MS Day 2020

May 30 was World MS Day 2020, an annual initiative for the MS community worldwide to unite. The Multiple Sclerosis International Federation created this global campaign to educate, raise awareness, and offer hope. Its free, online resources provide an abundance of helpful information. Fittingly, the theme for World MS…

Words to Live by: ‘I Am Fine’

“I am fine.” Three words I know as rote. I say them frequently and without hesitation. I utter them as much for others as I do for myself. My reality is too much for most. At times it is too much for me. This packaged response is almost expected. And…

Manifesting Change with SPMS

The state of our world lies heavy on my shoulders. I worry about and miss my family. Our geographical distance, although unchanged, seems to have grown exponentially. Is everyone so far, or am I so very confined? I understand how a prisoner in solitary confinement finds his own perception…

Zeposia Is Now Approved, But Expect Delays

Zeposia’s recent approval in the U.S. is exciting news for all in the MS community. Unfortunately, we will need to table that excitement a bit longer. Despite its approval, the treatment’s commercial distribution will be delayed by the COVID-19 pandemic. I am confident, however, that it will be…

I Am Beautifully Rare Despite SPMS

I have secondary progressive multiple sclerosis and I am rare. In honor of Rare Disease Day on Feb. 29, I honor myself. I honor you and anyone else with a rare disease. I have been asked if multiple sclerosis qualifies as a rare disease. It does if…

Finding My Way Through Sickness and Sadness with SPMS

I am hyperaware of the fragility of life. More specifically, the fragility of mine. Secondary progressive multiple sclerosis is an autoimmune disease. My immune system eats away at the myelin sheath surrounding my nerves. My disease-modifying therapy is an immunosuppressant. This further weakens my immunity. I have known…

The Rise of Superbugs, Antibiotic Resistance, and MS

I am living with an unenviable reality. An antibiotic-resistant, hospital-acquired infection that I developed two decades ago has reappeared. Before my multiple sclerosis diagnosis, I had a spinal cord stimulator implanted for pain control. Although the stimulator was removed shortly afterward, the infection remained. This infection presents itself when…

Traveling Without the Baggage of Fear

Traveling with secondary progressive multiple sclerosis is challenging. International travel adds some extra lengthy steps. That said, I have the bug. I’ve always had a hunger to see and experience new people and places. From a young age, I traveled alongside my parents, which gave me a cultural education…

Thankful Awakening: Accepting Change with SPMS

My happiness quotient correlates with my ability to give. I find tremendous satisfaction in doing this. This is one reason that I cherish Thanksgiving. I derive immense pleasure in creating this symbolic meal for those I love. For a subpar cook, I knock the socks off the classic Thanksgiving…

Dancing Doodle

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