Beating the Heat with MS: Lessons from the Walk-In Freezer

By Samuel Fitch

Before my multiple sclerosis (MS) diagnosis, I never understood why I always felt so warm—especially compared to others. Looking back, I realize how fortunate I was to work in my family’s restaurant. One unexpected benefit? A built-in cooling station. On particularly hot days, the walk-in freezer or refrigerator offered immediate relief when my body felt overwhelmed by the heat.

Like many of my fellow MS warriors, managing body temperature—especially in the heat—is a constant challenge. For me, warm weather isn’t just uncomfortable; it can completely derail my ability to function the next day. It’s frustrating because, here in Western New York, beautiful sunny days are few and far between. When I miss them, I feel guilty. I want to be outside enjoying them with my family—but sometimes, the risk just isn’t worth it.

So what’s my advice for managing the heat when you live with MS?

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Speaking Up Is Self Care

Speaking up. Standing up for myself. These are all things that you learn as you grow and mature in life. Advocating for my health though, piece of cake. I know my body like no one else. I understand how my body responds, reacts, and refuses. 

When I think of self-advocating for myself, I also think of speaking up not just in the medical sense, but also when something, or someone is not filling my cup. I think back on all of the instances in my younger adult life, and get angry with myself for not speaking up to say “no, my body cannot afford to go out tonight.” Or simply say something along the lines of “I’m sorry you don’t understand why I put my body and my health first, but it’s necessary for me to stay healthy.” 

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Self-Advocacy: Challenges, Tips, Mentors and Allies

By Stacie Prada

Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance.  Frustration grows when we meet opposition and live with pain and unmet needs.

Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.

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The Power of Being Your Own Advocate 

By Samuel Fitch

The word advocate means “a person who publicly supports or recommends a particular cause or policy.” But when it comes to self-advocacy, it means something even more personal—speaking up for yourself when no one else can. 

As I sit down to write this, I find myself in a unique place. On one hand, I’m celebrating a beautiful milestone: my daughter graduated from ministry school this week. On the other hand, I feel completely worn out. We spent 24 of the 72 hours on the road just getting to and from her graduation, and the exhaustion has caught up with me. Add in the personal demands of life, a career that requires a lot of me, and countless other responsibilities, and it’s no wonder I’m feeling drained. 

But here’s what I’ve learned: it’s OK to speak up for yourself. It’s OK to set boundaries with your time. It’s OK to give yourself permission to rest. That is self-advocacy. 

And for those of us living with something like MS, self-advocacy isn’t just helpful—it’s essential. After a diagnosis, the floodgates open. Well-meaning friends and family start offering opinions, articles, and advice. But being your own advocate means having confidence in the path you’ve chosen with your medical team. Even in the early days, when things aren’t going smoothly or symptoms don’t seem to improve, you have to trust your team—and yourself. 

Being a self-advocate means standing firm in the face of uncertainty. It means honoring your own voice even when your body feels weak. It means saying, “I’m not OK right now,” and knowing that’s a powerful, healthy thing to do. 

As I look at the picture of my wife and our four kids on the wall, I’m reminded how blessed I am to have a support system. But even with that support, I’ve learned to listen to my body when it says, “Enough.” And in those moments, I have to speak up—not just for my health, but for my future. 

Because sometimes, the strongest thing you can do… is rest. 

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The Joy of Imperfection

By Stacie Prada

If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection. 

I was a very timid and quiet child. I feared making mistakes, looking dumb, and not doing things right. I tried to avoid any possibility that I’d do something to be ridiculed or judged negatively.

I visibly shook throughout a presentation on candle-making to my fourth-grade class. It was torture to be the center of attention in a classroom. A high school presentation of a memorized poem wasn’t much better.  Neither my nine-year-old self nor my 15-year-old self would ever have imagined that someday I would frequently present with confidence to large groups. Young me would be amazed that I overcame my fear of public speaking. People who have only known me for the last 10 years would not believe I was ever that shy and fearful.

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Proud Memories

By Bonnie Lynn Ellison

May is a good time to reflect on myself, and what my younger self would be proud of. When I was young, I thought life was a rodeo! I competed in the National Little Britches Rodeo from 8 to 18 years old, and was proud of my ribbons, buckles, and trophies! I learned, if you got thrown off, you got back on the horse!

When I was young, I also played my guitar and sang in talent shows, from 7th grade through high school. In college, I performed with the FAB Company. We toured nationally in the early 1970’s, recorded four albums, and were contracted with the major international talent agency, William Morris. I’m proud that we wrote our own original music, songs, and comedy. We did concerts! I thought I was Taylor Swift!

I fell in love, got married, and two years later, I was diagnosed with multiple sclerosis. I was 25. It affected me like a stroke, on the right side of my body. I had never heard of this disease, so it was like an old rodeo injury to me. It took about three years to recover enough to write, sing, and perform again. And there were no assurances that it wouldn’t return. I had always been athletic and healthy. It was shocking for me, and a struggle.

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Yesterday’s Seeds; Today’s Garden!

By Nana Opong-Owusu

They say the habits, values, and choices we’ve planted in our past, shape the garden we stand in today — the decisions we’ve made, the habits we’ve formed, the passions we’ve nurtured, and the values we’ve carried quietly in our hearts. I didn’t appreciate these types of thoughts as a child, but as an adult I oftentimes find myself reflecting.

Growing up, I was always drawn to movement. Sports weren’t just a hobby — they were a way of life. Whether it was the freedom associated with biking around the city with my childhood friends, the camaraderie of my basketball teams, or the adrenaline of soccer tournaments, exercise and movement have always grounded me. Now as an adult, I see it gave me structure, perseverance, and most importantly, a familiarity with pushing through adversity. But alongside that physical drive, I’ve always carried something else: a caring heart. A giving heart.

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Looking Back, Moving Forward

By Samuel Fitch

This is my first blog post—so I’m hoping readers will extend a little grace. I’m 44 years old at the time of writing, and lately I’ve been reflecting on the last two decades of my life. One question keeps coming to mind: Would my 24-year-old self be proud of the man I’ve become and the career I’ve chosen?

At 24, I was newly married—Jessica and I had tied the knot in 2003. We were less than a year into marriage, expecting our first child, and I was working full-time at my family’s restaurant. We hadn’t bought our first home yet, but I was riding high on love, youth, and big dreams. At the same time, I was still dealing with some self-destructive habits—drinking, gambling—trying to figure out who I wanted to be as an adult.

Fast forward twenty years, and life has taken some sharp, unexpected turns. Jessica and I have grown stronger together. We’re now parents to four incredible children—three daughters and our youngest, a son. But that early vision I had for my career didn’t quite pan out the way I imagined.

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Spring Presents

By Stacie Prada

Without changes in routines or seasonal differences, it’s easy to lose track of time, day of the week, month, and even time of year. It’s good to have consistent healthy habits, but variety in schedule, activities, and environment helps us mark time.

Consider driving a long stretch of highway. They have names for the experience of driving a distance, losing track of time, and being surprised not to remember it: highway hypnosis and white line fever.

The more monotonous an experience, the less alert we’ll be, and we become more apt to operate on autopilot. It’s a small leap to compare this to our lives and how we experience time passing. The less we notice and the more we operate on autopilot, the more time can fly by.

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A Love Letter to My Younger Self

By: Emily Carlin

Understanding life with a chronic disease diagnosis is a long-term experience. For me, it took years to come to terms with the fact that I have MS. The journey was not easy but looking back I am proud of myself for how I handled that situation so early in my adulthood. 

For some background, I was 23 when I was diagnosed with MS. Unfortunately, I am very familiar with how this condition can impact your life, as some of my family members have lived with MS for many years. To write this piece, I’m going to take you on a little journey with me. Join me as I take you back to the time when I was first diagnosed as I pretend to take myself out for coffee as the 35-year-old woman, wife, and mother I am now.

I asked my younger self out to coffee. She showed up with glowing skin, long hair, vibrant, and full of life. She was also well rested (darn, I was jealous of that, being I’m now a mom of two toddlers). She asked me how my day was going with a cheerful smile. I paused for a second, I looked right in her eyes and told her she was beautiful before I answered. I softly smiled, and told her my day was going well, but I had some things I’d like to share with her.

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